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.

Wednesday, July 16, 2014

Whatever It Takes

"Let's get dressed. You have summer school", I tell Matthew.
 He quickly signs "vacuum" to me.
 "Yes, I'm sure you'll get to see the vacuum at school."
 Immediately, he signs "machine".
 "Hmmm...I don't know...does the janitor use the floor cleaning machine everyday?"

So, starts our conversation this morning.  It continued with several more signs for vacuum and machine and a few for car (which he also uses to indicate drive) and me reassuring him that most likely he would get to see those things, but that FIRST we have to get dressed!  On Monday, when I dropped Matthew off at summer school they mentioned that he now knows where the janitor's office is (not just his closet).  I didn't ask if they showed him where it was or if he discovered it on his own.  Some things are better not knowing.  They told me that if he works hard he gets to go visit him in his office.  I had to laugh, because when he started summer school three weeks ago, the big treat was getting to go see Mr. Supa.  Mr. Supa is the summer school principal, but he's also the principal at Roosevelt and Matthew loved getting to visit him during the school year too.  Move over, Mr. Supa...there's a new guy now!  

I started to think back to when Matthew first started ABA therapy (applied behavior analysis therapy) with Easter Seals - over three years ago now!  And one of the things that we had to add to his plan was what they called motivators - things that he would work for. He has things that will always be motivators but he also goes through phases.   

I admit I use motivators (if you do this________, then you can __________) often to get Matthew to do what I need him to do.  This kind of thing doesn't work on Abby, because she will say, "You can't bribe me, like you try to do with Matthew."  I don't think of it as bribery...I think of it as mommy sanity!  

And because I apparently like lists (they're like bullet points...easier to read) have been some of Matthew's favorite motivators over the years:

1.  Shop Vac -   Lots of kids get potty trained with the help of M&M's and don't get me wrong, Matthew loves M&M's with the best of them, but when he would use the potty he would get to go down to the basement and watch us use the shop vac.  He didn't want to use it, but he wanted to watch us use it and he also wanted to feel the air blowing out the side and tapping all the different surfaces and hoses.

2.  Garbage Trucks - One of Matthew's therapists knew that he liked garbage trucks so on a whim she looked up garbage truck videos on YouTube.  Holy Cow...did he get excited! Now, we're not talking about cartoon garbage trucks.  We are talking about people following garbage trucks on their route and videotaping it.  There are even videos of garbage trucks from different countries!  One of his favorites has the song Bad Boys from COPS in the background.  He gets so excited that he literally shakes, especially during the part where the arm of the garbage truck empties the can into the truck.

3.  Rollercoasters and Fair Rides - The same idea as the garbage truck videos except you watch people on rollercoasters and spinny rides at the fair.  He gets excited and shakes when he watches these videos too, although I'm pretty sure he would not go on any of them.  Last year he tried a ride that wasn't scary, but it wasn't a baby ride either.  They ended up having to stop the ride to let him off.

4.  Wagon Rides - Wagons have wheels.  Wheels are cool.  Not much more to say about this one...

5.  Birthday Video - He is obsessed with this right now!  He will put out his pointer finger and blow on it (yep...his own sign).  It means that he wants to watch one of our home videos of someone blowing out candles on their birthday cake.

6.  Storage Closet - He wants to go "explore" in the closet off of our office.  We do have a humidifier that we keep hidden in there (that he likes). Plus the closet has a hook that we use to keep him locked out, so it is super motivating for him to get to go in there.  In fact, the last few nights it has been motivating enough for him that he will go and INDEPENDENTLY put on his own pjs!  This is something that he is very capable of doing, but it is rarely an independent task done without prompting.

7.  Swinging - This can be going to the park and swinging or whenever there are two therapists on hand he will ask them to swing him by holding his arms and his legs.  And Grandpa Sieling has a way of swinging him where he holds him by his ankles.  It is amazing to see him use his stomach muscles to swing himself that way.  A reward for staying on the field for his baseball games is to go and swing in the specially designed swings.

8.  Mama Time - My personal favorite, of course.  When he first started therapy he could earn time to come visit me in the kitchen and help me cook. Now that therapy is a little earlier in the day because of summer, he will sometimes choose to work just to get time to sit on my lap.  And yep...I eat that up!

Thursday, July 10, 2014


Some kids have one special stuffed animal that they sleep with...some kids have LOTS of stuffed animals that they sleep with.  The closest thing Matthew has come to sleeping with a stuffed animal is a pillow pet. Correction:  Abby's pillow pet.  He would climb up the ladder to her bunk, take it out and sneak it up to his bedroom.  (Now that this is the third post which mentions him "taking" things...I am seeing that we might have a kleptomaniac on our hands.) Ever on the lookout for gift ideas for my family, I mentioned to my sister how much he loves this pillow pet, but that Abby wasn't too happy about it.  My sister bought him an orange (his favorite color) pillow pet for Christmas.  BUT...he doesn't want THIS pillow pet!  He wants Abby's pillow pet!  

Eventually, after being hidden for awhile, I was able to wash it and get it back into Abby's bed, undetected. Then in April, Rob had a birthday and his mom gave him one of those pillows that is upright so that you can lean against them (like for watching TV).  Within an hour it was up in Matthew's bed! Oh...but no worries, we've moved onto a new kind of "pillow".  Out of the blue Matthew realized that he liked the floor mat of our car (you know, it's kind of scratchy on the top and has bumps on the bottom and well the other thing is people put their shoes on it and we already know shoes rule!).  He would hold it in his lap and sometimes put it on his head when we would go for car rides.  When we would get home, he would always try to take it out of the car.  I kept insisting, "That needs to stay in the car!"  I didn't figure out how he got the first car mat in the house, until I caught him a few days later trying to sneak the second car mat out of the car.  He knew that if I saw him with the car mat in his hands it wouldn't fly.  So...while I was turning off the car and getting out, he pushed the car mat out of the window so that it would already be on the ground.  Unfortunately for him, I saw the mat on the ground and put two and two together.

You should know that he does have a blanky.  It might not be a small, little one that you can carry around, but he does sleep with it every night.  It is one of those homemade fleece tie blankets (where two pieces of fleece are put together and tied all the way around the edges).  This thing is heavy and warm...but he will go to sleep covered with it no matter if it is the middle of summer.  One of his favorite things is to have me tuck the blanket around him on all sides so that he looks like a mummy.  Then he'll move and mess it up and sign "more".

So, we've covered pillows and blankets, but really it's very interesting to see what else Matthew takes to bed. There have been so many weird things over the years.  In the beginning, I would be like, "You can't sleep with that!", but then I realized for him these things are like stuffed animals.  They are things that he loves and that provide him comfort.  There is usually something sensory about them (i.e. they are good for tapping, scratching, smelling, etc.).  

Without further ado, here is a Top Ten list of some of his favorites (in no particular order):

1.  Tinfoil pans (like you use when you make a turkey).

2.  Egg cartons (without eggs, thankfully)

3.  Disposable coffe cups (like from Starbucks)

4.  CD's

5.  Slippers

6.  Leaves (even the dry ones that break into a million pieces in the night)

7.  Ceramic art project that he made at school

8.  Boots (multiple pairs)

9.  Wooden spoons (yeah...we can never find them in the kitchen...)

10.  Watering cans (his own, but you can bet if he had a choice it would be our neighbors'...)


Tuesday, July 8, 2014

Autismic FB page

Okay, this is not an official blog post, but just wanted to let you know that there is now a FB page for this blog.  That way I can share shorter stories in addition to the longer blog posts.

Check it out and like it here:  Autismic

Thanks everybody!

Saturday, July 5, 2014

Mr. Bossypants

Matthew is considered primarily non-verbal.  The words he can say the best are: go, mama, and dada. He can do approximations for "hi" and "bye".  He says, "ba" for bath and "wu" for waffles.  He also uses lots of signs. Honestly, I have lost track of how many he knows.  The cool thing is that if he doesn't know a sign, he will make up his own.  If he wants an underdog on the swing he will push his hand backwards under the swing while he is on it. He folds his hand in prayer when he is talking about church. If he rubs his own chin, that means he wants to feel your beard. Even though he knows the sign for grandpa, he has a special sign when Grandpa Buettner is around. He rubs his hand across his head because he loves it when Grandpa Buettner scratches his head. He also has an app on his iPad that he uses to communicate (especially at school), but that's probably a whole post of its own.

You would think that not being able to "talk" in the traditional sense would limit him, but it rarely does. Not to say that we always understand him.  For example, just yesterday, he kept pointing to a shelf on the top of the garage. I went up a step stool and couldn't see anything that he would want (or be allowed to have...i.e. fire starters.) Rob even lifted him up so that he could see the top shelf. We still aren't sure what he thought he wanted. But I would say at least 8 out of 10 times he figures out a way to be understood.

One type of communication that he is really good at is being bossy. Bossy with a capital B. B-o-o-o-o-s-s-y. Bossy AND persistent!  Here are some of his most popular things to be bossy about:

1.  In the morning when I'm getting dressed, he will pull open my bottom drawer and point to my jeans. Hey kid, I'm not wearing jeans when it's 80 degrees out! See # 2 for why he wants me to wear jeans.

2.  When I am wearing jeans, he insists that I keep my phone in my back pocket. If I set it down, he will pick it up and put it back in my pocket. If I humor him and let it stay there, he will follow me around and tap it about every 30 seconds, just to make sure it's still there. To the casual observer, it would appear that he' s tapping my butt, but really he's tapping to check my phone. He will push it down farther if it looks like it is up too high. 

3.  He will often insist we take off our shoes and put on slippers. He LOVES slippers! (If you bought him slippers he wouldn't wear them, but he will steal yours. He does this to both grandmas often!). At our house he mainly just tries to get us to wear them, but he has been seen shuffling around in Abby's fluffy purple ones. (Yes, footwear...slippers, boots, shoes could probably be it's own post too).

4. Keeping with the theme of wanting us to be comfortable, he will make us sit down in the recliner and then put the footrest up. 

5. Once, you are sitting though, be careful, because chances are he will be bossy and ask you to cross your legs in a certain way. He does this by just picking up your leg and putting it where he wants it.

6.  If he lifts up his shirt, it means he wants you to scratch his back.  He has Grandma Buettner wrapped around his finger on this one. 

7.  Pretty much anyone who meets Matthew has been asked to drive.  He could have just met you or you could be only 10 and he'll still ask you to drive.  And he will ask you...over and over and over!

8.  Now that he has you in the car, the bossiness stops, right? Wrong!  Sometimes he'll point which direction he thinks you should go.  He tries to be a radio controller from the backseat too.  If you switch stations and he liked the song that was playing or doesn't like the new one, he will start to cry.  It took us awhile to forgive out why he was spontaneously crying in the car. you can see...never underestimate the strong, silent type.


Thursday, July 3, 2014

Message to Snarky Woman at the Park

 One thing you need to know about Matthew is that he has things that he is attracted to...big things like cars and garages and small things like styrofoam cups and wooden spoons. Many things have been a source of attraction for him for years, but new ones pop up occasionally too.  The list is actually quite extensive.  I use the word attraction because he can be so drawn to these items, almost like there's a magnetic pull.  If he really wants said object he will run for it (with blinders on) without thought of danger.  Sometimes I can sense what he's drawn to by the way he moves his head to see it better or a "look" he gets in his eyes. Sometimes I can head him off at the pass, but not always!

The other day we were on a bike ride and we made a play stop at a park.  You know it's hard work getting pulled in a bike carrier!  Matthew gets out of the carrier and makes a run for the playground.  Where could he be running?  The slide?  The monkey bars? Nope...he runs up to a mom who's watching her child at the top of the playground.  She's holding a bucket of sand toys.  Did I mention that sand toys would probably make "the list"?  

He grabs for a blue shovel and takes it out of the bucket.  The woman's reaction was to snatch the shovel out of his hand.  At that point I was able to catch up to him and give the "that doesn't belong to us...we can't take things that don't belong to us" speech and redirect him to a different part of the playground.  

But the attraction was pretty strong and he made at least two more unsuccessful attempts to get one of the shovels.  The woman never yelled at him, but she acted more like another child would act than a mom.  She wouldn't look at him or talk to him.  At the park I directed my words and attention  to Matthew, but now I have a few words for that other Mom.

To Snarky Woman at the Park:

1.  Just so you know...I don't teach or allow my son to take things that don't belong to him. It's something we are working on and going to the park gives us opportunities to do exactly that.  

2.  I don't expect you to let him take it, but could you talk to him, rather than grab it back out of his hands?  You can say no to him, but in a respectful way.  

3. By acting like he was the most bothersome thing at the park you might have possibly created a cycle.  I believe he could sense your disdain and that made him want the shovel even more.  We all know instances of dogs or cats who will choose (out of a whole room full of people) the one "non-dog" person.  Humans can have that instinct too.  

4.  Lighten up.  It's a toy shovel.  Not your phone.  Not your car keys.  Not your purse.  A toy shovel.

5.  Since I don't know you, I am going to assume you were just having a bad day.  If not, I feel sorry for your daughter who will learn from your actions.  

For every bad egg, there's a million good ones.  So...

To the Husband of Snarky Woman:

1.  Thank you for being embarrassed by your wife's actions.

2.  Thank you for offering to let Matthew play with the toys.  He's used to our local pool's sand area where there are tons of buckets and toys that everyone shares.  

3.  Thanks for asking how to sign "You're welcome" when we signed "Thank you".  

As soon as this man offered his kindness, it started to sprinkle...literally like two drops.  But that was enough for this woman to say, "Let's go."  I'm guessing they had an interesting conversation on the way home!