Oh Baby!

Matthew has always had a fascination with baby equipment...high chairs, strollers, car seats, baby swings, etc.  Some of the fascination is because he likes to sit in the aforementioned items even though he is too big to fit half the time.  He has attempted to sit in strollers designed for baby dolls!  The other part of the fascination comes from the fact that he likes to tap the plastic surfaces or in the case of car seat carriers check the underside (almost like he's trying to figure out how they work).  

It was probably gradual, but it felt like overnight that he started to become interested in babies themselves. He will say "bebe" when he notices them out and about.  In the morning at school when we line up the first thing he signs is "I want to see" and then says "bebe".  He knows one of the moms who has a double stroller with a baby and a toddler. She lets him peek in at the baby to see if he is sleeping and tap the bottom of the toddler's shoes.  It's part of the morning ritual.  I know it bothers him if we get to school when the first bell rings (our sign to line up) because then we don't have time to visit the babies.  

While for the most part it is a sweet, cute fascination, it is not without its challenges.  We are working hard to teach him that we can "look but not touch" when its a baby we don't know.  We now have a social story that we read during therapy that talks about what to do when you see a baby out and about that you don't know. We are also trying to teach him that if it is a baby that we know, you need to ask before you grab anything or touch the baby or the baby's equipment.  Just yesterday we were at a restaurant and he saw a dad carrying a toddler and he reached up and touched the man's arm and started to walk with him.  Luckily, the man smiled down at him and we were able to redirect him easily.  If you read Still Shaking you will know that he has a dangerous attraction to cars, so this fascination compounds things a bit because often when a van or car door opens there is a baby car seat or a parent getting a baby out of the car to put in a stroller.  So it's like he has double motivation to run and check out the situation!  

I partially blame Michael for Matthew's interest in babies.  Michael is a baby/toddler in a family that Matthew follows on YouTube.  Crazy, I know!  Technically it started when one of Matthew's therapists got the idea to search garbage trucks on YouTube because she knew how much he liked them.  For a kid who has no interest in TV or movies...he was hooked...on garbage truck videos!  His whole body would shake with excitement when the garbage truck would shoot out the arm and grab the can and dump it into the truck.  In case you are wondering, there are hundreds (thousands?) of videos out there that follow garbage trucks on their routes.  Overtime Matthew has expanded his viewing options to include wagons, doctor and dentist visits, fair rides and bouncy houses.  It was during one of the wagon videos that he was introduced to Michael and his family which includes 5 children total!  I have watched the videos with him and can even recite a few lines by heart. 

Abby has suggested that what Matthew would really like is if we adopted another baby! Well...I can guarantee you that is not going to happen! A Christmas present idea I had was to buy him a baby doll and stroller.  Now if we can just keep him from breaking the stroller by trying to sit in it!  

                                                 

Favorite Season

I tried to ask Matthew what his favorite season was and he nodded "yes"  for each one. Now it's possible that he doesn't conceptually grasp the four different seasons, but he signed snow when I said winter so I think he understood what I was asking.  He also might not exactly understand what it is meant by "favorite". However, it's also possible that they are ALL his favorite.  Or put in another way...his favorite season might be whichever season we are currently in.

If we go with that theory, then Fall is his favorite season.  There are the obvious reasons why he might love fall:

* leaves - Matthew is a leaf collector.  If we go for a walk, we have to stop to get at least one leaf (usually more).  He likes to hold them and wave them.  There is usually at least one in his bed at night and several in the backseat of the car.  And of course he loves jumping and sitting in piles of leaves!

* Halloween - Last year he really caught on to the whole knocking and signing "Trick or Treat", getting candy, and then singing "Thank you"  idea.  In years past he didn't care if we only trick or treated for twenty minutes.  But last year he made it for over an hour and wanted to keep going.

*pumpkins - He loves to tap them, pound them, and run his hands over the bumps and ridges.  They have started showing up for sale at grocery stores and he immediately points to them. He loves taking a hayride out to a pumpkin patch.  Once he is out in the patch he will sit on the pumpkin he chooses.

*his special ghost - When Matthew was little, Grandma Buettner bought him a colored light up ghost.  It is made out of an interesting waxy plastic that looks like it has been melted.  It has a great texture for scratching.  At the end of Halloween she takes it home and then brings it back to him the next October.

Just this weekend I realized another reason that Matthew might love fall...BOUNCY HOUSES!!!  Saturday,  September 12th we had a local city festival and he was able to bounce to his heart's content.  Friday, September 18th there was a Fun Fair at his school.  We figured the only way to go was the wristband for unlimited visits to the inflatables.  The last half hour of the night, a girl in his class who is always sweet to him, took his hand and they went on an inflatable obstacle course at least five times in a row! She helped keep him moving through the course.  Otherwise he liked to stop in the middle and jump or lay down and feel the movement from others that were coming after him.  Yesterday, we attended a street festival right by our house and there were three FREE bouncy houses!  Yeah...we spent a little time there!

So the question is...where can we go next weekend where there will be a bouncy house? We wouldn't want to break our streak of three weekends in a row! And the weekend after that my mom is having a 70th birthday celebration.  I wonder what she would think of a bouncy house at her party?!?!


                                                                 

Unprompted

Every week I drive Matthew to Social Skills class three different days for about three hours.  And I do it mostly because he loves to go, but my hope is that he will transfer some of the skills that he is learning there. This summer I'm seeing the pay-off...I've witnessed some pretty awesome steps forward in this area.  He's just so much more aware of people and what's happening around him.

One of my favorite places to take him is to our neighborhood pool.  There's this amazing sand area that he LOVES.  It's great because its' safe (fenced in) and I can watch him, yet at the same time give him some freedom to explore and interact with other kids.  If you read My Way of Yelling From the Rooftops (if you didn't...go read it!  It's a glimpse of him exactly a year ago at the same sand area) you will know that we have had other positive interactions at the sand area, but that it can also be a little stressful because you never know for sure which way things are going to go.

Two of my "tuck in the back of your brain" stories happened there this summer.  I was sitting on a bench watching Matthew as he stood next to a boy who was deep into constructing a ditch.  He asked Matthew a question.  I couldn't hear what the question was from where I was sitting, but I saw Matthew nod his head. Then he pointed to his bucket.  The boy pointed to the water area.  Matthew went over and filled his bucket with water and came back and poured it in the ditch.  He handed the bucket to the boy who proceeded to do the same thing that Matthew had just done.  They played like this for probably at least ten minutes.  It seemed that the boy would occasionally say something to Matthew, but he didn't seem bothered that Matthew didn't say anything back.  In the second scenario Matthew and I were building a moat around a castle (okay, it was actually a round hump, but castle sounds better!).  Three adorable girls came up and one of them asked if they could play.  I said, "Of course" and took a few steps back to be out of the scene. Matthew did his favorite job of filling his bucket full of water.  Every time he would bring it to them, they would say "Thank you!" and one particularly genuine girl would tell him, "You are SO helpful!"

The other big observation that I have made is how he is doing certain things unprompted now.  In the past, we would need to prompt him to sign, "Thank you" when people gave him things.  Most recently he has started to sign "Thank you" to me when I give him something that he wants like a snack or a toy.  I was telling his doctor this at his annual check-up.  And the end of the appointment she told him that he could pick out two stickers as she walked out of the room.  He took the two stickers and then pointed to the high cupboard in the exam room.  He had remembered that the last time she had taken a tongue depressor and put two same shaped stickers with the sticky part facing each other so that it made a "flapper" for him.  We peeked into her office and asked her if she would make him one before we left.   When she handed it to him, he signed "Thank you" with a big smile on his face.

Another thing that we used to have to prompt him to do was to wave and say "hi" or "bye" back to people. Often he wasn't even aware that it was happening.  Pretty regularly now he will acknowledge people's waves and "hi" and "bye".  In fact, if he walks out of our house and sees our neighbor to the right he will wave FIRST!  Part of me wonders if he is truly being that friendly or if it is part of a ploy on his part to get into their garage and get his hands on their watering can (it's so much cooler than ours).  But for now I'll take it as that one person he feels comfortable initiating the wave with and I'll watch for it to spread.  


                                                               

Painting Over a Memory

It's time.  I know. We need to paint Matthew's room.  The red and white walls with panda bear stencils make his room look like a baby room.  The shelf of panda bears is gathering dust.  If Matthew loved pandas, then I wouldn't care if it still looked babyish.  But he could care less about pandas.  The only interest he shows in animals is when he tries to get me to cut the cats' nails (that's exciting stuff!).

The idea for the panda theme came to us when we were on vacation in Maine.  We had started the adoption process for Abby and still had a pretty long wait ahead of us.  Every shop we went into had an adorable panda bear.  We ignored them for awhile and then we decided to just buy one or two...before we knew it we had to ship a WHOLE box of pandas home!

We decided to go with red for the bottom of the walls because red is considered a good luck color in China. My mom made red and white checked curtains for the two openings that served as a storage closet.  My mother in law found an adorable stuffed panda chair. Not sure what inspired the stenciling idea.  I, for sure, was not an expert on the topic and did end up calling an artsy neighbor to help me.

Admittedly, the room was created for Abby.  And when we moved Abby downstairs to prepare for Baby #2, we were expecting to have another girl.  With the news that Baby # 2 was going to be a boy, I initially had ideas of re-doing his room.  But then the reality of having to paint Abby's new room made me happy to realize that the room was gender neutral and good to go.

Thinking back to those memories alone would make it hard to paint over the pandas.  But I have an even more specific memory that has been stalling me from making the big change.  The day I was working on stenciling the room was the same day that Abby's referral pictures were coming via UPS.  We knew her name (Chang Ming Qing), her approximate birth date (November 14, 2002), her birth city (Changde), etc. but we did not know what she looked like.  We were so anxious to "meet" her through pictures until we could meet her in person.

I can tell you that every time I heard a vehicle I would jump up and look out the window.  I did not want to get the dreaded yellow delivery notice!  I was not going to wait another day!  Finally, I peeked out the window and saw the familiar brown truck.  I was down the steps and at the front door before the UPS man had time to get out of his truck!

Like I said...It's time.  I know.  And now maybe I can do it because I have written this memory down.  Even though some of the details are sketchy, the important parts are there.  And I have a new realization as Abby and I are talking about ideas for Matthew's new room decor (no, I am not stenciling vacuum cleaners!). Re-painting the room (under Matthew's supervision) will be a NEW memory.  And maybe someday I will write about that memory!



                                                               

     

Perception Contemplation

Perception is reality. 

I don't know. It's just too black and white for me.  Maybe if we add one word I can get on board with it.

Perception is sometimes reality.  

There.  The first quote seems to imply that perception is ALWAYS reality.  I think the best way for me to explain my thinking on this is to share a few Matthew stories.

Perception:  He's in his own world and not listening to what others are saying, especially adults.
Reality:  A few weeks ago (maybe over a month now - I can't believe I could keep this story under wraps that long) we were sitting in church and our pastor was delivering the sermon.  Our pastor mentioned the word Mt. Calvary.  Matthew looked up at me and put his arms out and moved his body to signify "flying".  I know what you're thinking...there were no airplanes at Mt. Calvary, but follow me a little bit longer.  It took me a minute to make the connection, but when I put it together I was floored.  We recently figured out that when he made that flying gesture it meant that he wanted to hear The Army Song (a song that we sing in Children's Choir).  That took some detective work to figure out, believe me. But when we sing the song we put out our arms like we are flying for the line that says "I may never fly over the enemy".  I quickly went through the words in the song in my head until I hit, "I may never march in the infantry, ride in the calvary..."  So even though the word calvary was used two different ways...he heard it...he was listening!  The potential for what this could mean for him is HUGE!  (And yes, I still think I should get a prize for keeping that story to myself for so long!)

Perception: He's not aware of what's going on around him.
Reality:  One day at school he was heading up to the carpet and he passed a classmate who was having trouble finding her book.  He paused, pulled her book out far enough for her to see and kept on walking up to the carpet to join his peers.

Perception:  He probably has trouble with long term memory.
Reality:  If he has been to your house, he will remember exactly where you keep your vacuum.  When we are driving and are one the same road as his doctor or dentist offices he will do his invented sign for those places.  When we go to my sister's cabin (which we only visit 1-2 x a year) he will remember specific places that objects are kept.  And he will know if they are missing!  We found that out the hard way last summer when he kept signing "wagon" because he remembered that they had had a riding toy that you can push.

Perception:  He can't problem solve.
Reality:  At school they started using a "standing desk" (a desk that is tall enough to stand at).  They took pictures on his ipad and commented that he loves it.  That week at dinner, he pushed away his chair and pulled up his stool and made a "standing table". Now I don't condone this next behavior but it does show his problem solving abilities.  He made garbage by unrolling toilet paper and throwing it away because he loves to empty wastebaskets (one time he threw away multiple pairs of underwear to make garbage.) When we are at restaurants or new places he will sign "bathroom".  He often barely has to go, but he knows I will not say "no" to the bathroom sign and it gives him a chance to explore and see more.

Your perceptions will be based on what you initially see: Matthew's noises, his jumping, his flapping, his smelling, his silly giggling, etc. Your perceptions will also be based on your experiences with other people with autism or other disabilities.  If you're in the education or medical field your perceptions might even be influenced by a clinical definition of autism and its characteristics.  And some of your perceptions might be true...SOME of the time.

At least that's my perception.  And you know what they say about perception...


                                                     

Vaccine Against Autism?

Several weeks ago, a friend posted a question on Facebook - What if there was a vaccine against autism? (I'm sure spurred by all the vaccination talk in the news at the time.)  I rather impulsively replied in my comment, "Well, then Matthew wouldn't be... Matthew.  And that would be very sad."

I want to be clear that if you choose to keep reading, the thoughts I am about to say are solely mine.  It is not meant to be representative of the autism society at large.  Every child with autism is different and every family dealing with autism might have a different perspective.

Autism is a huge part of who Matthew is...his learning style, his thought processing, his perseverance, his uniqueness, etc.  If you read True Colors  I go into detail about just some of the many things that make him special.  So, it wouldn't be like you were changing just one part of him if you took his autism away...you would be majorly changing who he is!

If I had a child with a disability that was painful; caused them physical or mental pain I would be first in line for something to ease their suffering.  But Matthew isn't in pain or suffering...in fact he might be one of the happiest kids I know!  I realize that might change as he gets older and kids might not be as accepting of him as they are now, but hopefully everything we are doing now will help him deal with those issues later.

Are there things I would want to change for him?  Of course! If there was a way to make learning easier for him - YES!  A way for him to speak with words - YES!  A way to guarantee his safety and no running behaviors - YES!  But that's very different than wanting his autism to be gone completely!

In a previous blog post Did You Know? I talked about whether we knew if Matthew had autism when we adopted him.  I explained that I was glad that we didn't know, because what if the autism label had caused us to turn down his referral.  I think there are some similarities to this vaccination idea.  When he was first born or when we first adopted him if we were offered a vaccine against autism would we have taken it?  I am thinking we very well might have said yes. I am guessing a lot of people would.  But now we KNOW Matthew...we KNOW his autism and I would have to say "No thank you."

I don't even expect some people who read this to understand that.  I get it.  If I didn't have Matthew, I might not understand or believe someone saying they didn't want a vaccine against autism either.  My hope, though, is that by sharing this blog you get a glimpse of what it would be like to have a Matthew in your life.


                                                                   

Still Shaking...

I'm still shaking...

I'm holding back tears because I'm sitting in a public place and nobody likes to cry in front of people.

Here's how the morning was supposed to go.  I was going to drop Matthew off at Social Skills class and then take my car for an oil change.  I was going to go to the coffee shop two doors down and finish a blog post that I started last Saturday.

Yes, I dropped him off at Social Skills.  Yes I dropped off my car for an oil change.  And yes here I am at the coffee shop working on my blog...but I can't finish last week's blog post.  At least not right now. Because there is too much emotion running through my body and I know that I have to write about it or I will spontaneously combust!

Let's go back about twenty minutes.  I pulled up in front of Easter Seals and was planning on getting Matthew out on my side, because there was a bit of a snowbank on his side. As I got out of my car I saw another mom coming down the walk to go to her van. I smiled as she pulled on her hat and mittens because it is so cold today that you need them even for the short walk to your vehicle.  But that's not what Matthew saw.  Matthew saw this as an opportunity - an opportunity for an open car door.  I was coming around the back to help him out since he had already opened his door.  But once his brain saw that opportunity it was like an explosion and he was off.  He ran towards her van.  Another mom had pulled up on the other side of the drive and saw what was happening and hopped out of her car and ran to him.  Meanwhile, I awkwardly ran across the snowy part and when I got to him he had pulled open the van door.  He was happily scratching the inside of the door because of it's interesting texture.  He was not about to move even though I was grabbing his body with my whole body.  It's amazing how strong he can be when he is hyper-focused on something that he wants.  Finally, I said, "Don't you want to go to play class?"  He loves play class so he came with me then.

I know I probably should have gotten mad at him or given him a time out when we got inside, but I was just trying to keep it together.   I realize that it turned out okay, that he's safe, but my brain can't help wonder "What if?" What if the other mom hadn't run to him? What if the mom in the van had not seen him open the car door? What if she had started to take off as he approached or as he was opening the door?  I could keep going but I think you get the idea.  An annoying, yet familiar question ran through my head, "How am I going to keep him safe???"  

This is not the first running incident we have had with Matthew.  Some of my personal Facebook friends will remember when I wrote this note entitled Scary Stuff back in May:

I admit when it comes to Matthew I usually share the funny stories, the ones that make me smile. But tonight I have a scary story...I couldn't even write about it when it happened because it was too fresh. Matthew and I were at the park. He had just come down the slide and was standing there. I followed his gaze and saw that he was looking at a van with its door open as a mom was gathering her kids inside. I saw the look in his eyes...the one he gets right before he's going to run. I started to move, but he was a few steps from me and faster. Calling his name and yelling STOP didn't even make him flinch. By the time I had caught up to him, he had pushed his way past the woman, gotten into the van and was buckling himself into a car seat. I could overhear her say to him, "Honey, you're in the wrong van" and her children were giggling. But she was wrong...he was in the right van (in his mind). He wasn't confused, he didn't think it was OUR car...he wanted to go in THAT van. The mother said to me, "I didn't even see him until he was in the van. I tried to hold him back, but he is strong. I couldn't move him." Then she said to me, "Thank goodness I wasn't a kidnapper...they'd be driving away already." My heart which had previously dropped to my stomach was now somewhere down by my knees. 

My mother in law had a scary incident last summer too where she was walking with Matthew right on our block and he saw our neighbor's van.  He has ridden in this van and has a fascination with it.  I'm sure he got "that look" in his eye and when that happens nothing else matters.  He took off across the street.  I wasn't there, but when my mother-in-law tells about how there was a car just turning onto our street I can feel what she must have felt.  The adrenaline, the anger, the worry, the relief...it's a flood of emotions all at once.  

I know we won't be able to control every situation, but all we can do is control as much as we can.  We can't ever truly let our guard down.  A couple of years ago we had bought these special plastic covers that fit over the buckle so that Matthew couldn't unbuckle himself.  We had really bought them for longer car rides so that he wouldn't unbuckle when were on the freeway.  He was going through a phase where he thought it was "funny"to unbuckle himself.  I admit he seemed to outgrow that phase (thank goodness) so we haven't been using them.  I don't even know where they are anymore, but I think we should buy a new set of them and use them EVERY time he's in the car.  That way he can't get out of the car without us being ready...without us unbuckling him.  

Okay...my breathing has returned to normal and my hands have stopped shaking (for the most part).  Thank you for being there and reading this.  By working through my feelings in writing, it helped me come up with the buckle idea.  Sometimes that's what it takes...


                                                        

One Word

I was going through Matthew's backpack when I saw an envelope in the bottom of it. Immediately, I knew it was a thank you card from one of his teachers or teacher assistants.  Totally not necessary since my Christmas gifts to them are my way of saying, "Thank you!"  I admit I read it quickly.  And then I stopped.  I opened up the card and read it again.  One word caught my attention.  "I love working with our Matthew." One word. Our. That one word changed the meaning of the sentence for me.  If she had written "I love working with Matthew",  I would know that she loves working with my son. But by adding that one word, our,  it meant "I love working with this boy who belongs here, is accepted here and that we all take responsibility in caring for."  I already knew this of course, see Just the Right Place, but it's always good to be reminded.  In that blog post I mentioned ten reasons why his school is the right place for him.  Since that blog we have had his IEP meeting, where I was reassured of that feeling again.  In that meeting, someone commented "Everyone loves Matthew.  We all love Matthew".  And it was genuine and sincere.  As we went around the room and staff updated us with information about Matthew, it was apparent it went way beyond sharing what he is doing academically and behaviorally.  Each person had a unique little story or tidbit to tell about Matthew. Stories that show that they really know who Matthew is and that they "get him". In fact just today I had written a note in his communication book that it was killing Matthew to see new snow and not be able to play in it.  Later in the day I got an email and a picture of Matthew playing with snow in a big container inside the school (shown below).  

As I was reflecting on this I realized that as a family we are really lucky, because school isn't the only place where they think of him as "our Matthew".  It extends to other parts of our lives as well (our friends, our family, our neighborhood, and our church.)  In the interest of not turning this into a book length blog post,  I thought I would share some of the ways our church fit this description too (edited from a church newsletter article I wrote).

Acceptance and Understanding - Matthew is accepted for who he is.  People don't look at him funny when he starts jumping, making noises or flapping.  They understand that many of these things are his way of showing excitement.  People understand his need for touch and let him scratch their beards.  Several members have told us that they were "moved" when Matthew chose their lap as a place to sit or their hand to hold.  They don't blink an eye when they see him coming into church with both a plastic waffle and bun from the play food from the nursery.  Every Sunday these are his two favorite items to carry around (and scratch).

Valuing - Our church goes beyond accepting Matthew.  They value him as a member. When he is in Sunday School, his teachers ask him questions, just like they ask the other students in the class.  With my support we can facilitate his response which helps the other students see him as an important member of the class too. Our childrens' choir director knows that one of Matthew's strengths is jumping.  So when she leads us in singing songs that involve jumping, she often does a little shout out to Matthew, letting him know to get his jumping feet ready.

Social Skills - Something that Matthew will probably always be working on are social skills.  Church is a safe place to make mistakes and learn from his mistakes.  Sunday School, Fellowship/Treat Time, Nursery, and even the worship service (i.e. passing of the peace) itself all give him opportunities to learn and grow socially.  Being invited to birthday parties of his Sunday School friends is another opportunity that he has to work on his social skills.

My hope with this blog is that even readers who have never met Matthew feel like they know him, understand, and accept him.  That to all of us he is  "our Matthew".

Author Note:  One of my favorite "teacher books" is Choice Words by Peter Johnston.  It made me a firm believer that the words we choose to use and say do matter.

Top 5 Posts from 2014

It's January 1st, 2015 - the first day of a brand new year!  I'm not a big one for making New Year's resolutions, but I do have a goal to make more time for writing...both for the blog and other kinds of writing too.  I'm going to stretch myself and try some new kinds of writing.  So, don't be surprised if I post something a little different,  like a poem!

I also want to take this opportunity to thank everyone who has stopped by and visited this blog.  I enjoy writing for the sake of writing, but it is so much more fun when you know there is an audience out there enjoying what you have written.  I am grateful to each and every one of you.  I have had some feedback as of late that I should widen my audience because my stories are both entertaining and educational.  That my stories help people who don't have a direct link to autism to understand more about what life might be like both for the child with autism and the family, with the understanding that every child with autism is different. If you have any ideas about ways to increase the audience base I would love to hear them.  If you haven't had a chance to like Autismic on Facebook...I'd love to have you join us over there (Autismic Facebook Page).  I share shorter stories and pictures that give a window into Matthew's personality on the Facebook page, plus I post when there's new blog entries.

Here are the 5 top most viewed blog posts for 2014 (Year 1 of the blog!)

1.  True Colors (Things that make Matthew unique and loveable)
 
2.  Message to Snarky Woman at the Park  (First blog post ever!)

3.  Did You Know? (Answers the question of whether we knew Matthew had autism when we adopted him)

4.  Take Me Out to the Ballgame (All About Miracle League - a fantastic organization)

5.  My Way of Yelling from the Rooftops (a special moment that happened this summer at the sand area of our neighborhood pool)

While you are on the blog, check out some of the other posts that you might have missed.

Happy New Year!