Saturday, June 30, 2018


When Matthew was younger, going to the doctor was pure torture.  Just pulling up in the parking lot would bring tears. He would cry the whole time we were in the waiting room. The crying got more intense as we were in the exam room. Shots and looking into ears (he had frequent ear infections prior to getting tubes put in) required additional staff support.  We would leave completely worn out. Pretty soon he started to associate any brick building with the doctor’s office. We would pull up to the library or a bank and he would start to whimper from the backseat.  In his mind, Brick Building = Doctor.

Another one of Matthew’s fears is fireworks.  He just doesn’t enjoy them at all, especially the extra loud booming ones.  While we have had some semi-successful 4th of July firework experiences complete with a wagon, ipad, headphones and root beer, he still would much rather avoid them altogether. A couple of years ago, we decided to try taking him to a Brewers game.  We completely forgot about the fact that they set off a few fireworks right at the beginning of the game and anytime the Brewers get a homerun. With both the fireworks and the loud clapping, Matthew was not a fan of going to the Brewer game. So now there is quite list of connections from that experience!  Brewer Game = Fireworks, Packers = Brewer Game = Fireworks, any mention of the word game =Brewer game = fireworks. Unfortunately for Matthew, we are a Brewer fan family, so any mention of the Brewers, wearing of Brewer clothing or mention of the score causes him to be alarmed and think we are going to the game.  Recently, I discovered a new connection to fireworks. We were at a relative’s cabin and they wanted to take us out on their boat for a quick ride. I took Matthew to the bathroom before we got out on the lake and he started crying hard in the bathroom and signing fireworks. I had no idea why he thought there were going to be fireworks on the boat, until Rob reminded me that the last time we had been on a boat we had gone out to see fireworks out on a lake.  You can see how strong his connections are, because that boat ride was 5 years ago!

Sometimes just the mention of one of his fears causes a negative reaction (maybe not tears, but he has a very strong “uh uh” sound that he makes while he shakes his head no.)  When Abby was in fifth grade she was part of Mad Hot Dance. We were watching one of her performances and I clearly remember them dancing to the 70’s song “Car Wash”. Every time the words “car wash” came up in that song, he would look at him with a panicky look on his face and I had to convince him that we were not going to the car wash.  Unfortunately, Abby, being a typical sibling, would use the knowledge of his fear of car washes to her advantage. I would be driving somewhere and out of nowhere, Matthew would make his emphatic no sound/head gesture. I would look at Abby and say, “Why is he doing that?” She would act innocent and shrug her shoulders. But finally, one time, I caught her whispering, “Car wash” to him!  She even tried to be clever and would say things like “Car shower” or “Car bath”, and he would react the same way! It was probably partly because of the suspicious way that she would whisper it to him in the backseat.

Not all of his associations are rooted in fears or negative thoughts.  He has positive associations with each of his grandparents. When he sees Grandma B. he signs candy and lifts up his shirt to get his back scratched.  Grandpa B. is good for lap sitting and head rubs. If Grandma S. is coming over for the day he might get out a mixing bowl and some oven mitts. Grandpa S. is synonymous with human jungle gym.  And all grandparents (or should I include aunts and uncles too) get the sign “drive” as he wants to ride in their vehicles any chance he gets.

Places have special connections too:
Kohl’s = Slippers,
Target = Carseats,
The Park = Swinging
Miracle League Baseball = Piggyback rides from his buddy
Church = Trying to sit with anyone BUT Mom and Dad

This Spring Matthew had a special Parent-Child visit to the middle school just for kids that will be in the special education program.  They had a whole powerpoint presentation and various staff members introduced themselves. They explained about the different classes and talked about extracurricular opportunities, but I am pretty sure the part that is stuck in his memory is the glazed doughnut that he got upon entering the auditorium. Middle School = Doughnuts!

Friday, March 30, 2018

Outside My Window

When I look out my back window, I see a backyard that I always describe as the size of a postage stamp.  Right now, it is stuck between seasons…the grass is short and brown, but on the side a few yellow buds are trying to pop through the ground.  A few kid shovels are randomly strewn where Matthew has left them.  The sandbox’s lid has moved from being fully on to a little off kilter to totally off, leaving the sand underneath a layer of water (a combination of rain and melted snow). This mysteriously happens every year. Right below the window are the soggy, brown leaves that did not adhere to the city’s leave pickup schedule. 

But when I close my eyes I can see more.

The tiny green and tan playset from First Step where you climb up one side and slide down the other and it has a little fort in the middle.  Four year old Abby and Lauren who lives right next door would climb to the very top and yell at the top of their lungs, “Ta Da” in complete unison.

The little blue plastic pool with textured bubbles on the bottom.  An invention that could keep Matthew in one place for hours…there’s not many things that can stake that claim (even playdough and his favorite blocks might expire before an hour is up). 

The artistic display of sidewalk art.  Abby could draw better pictures with sidewalk chalk than I could with pen and paper.  One of my favorite drawings was done right around Mother’s Day and it was a mother unicorn with two baby unicorns nursing. 

The pile of leaves with a black haired head popping out.  Leaves have always been special to Matthew (at any given moment – even winter) there will be remnants of a beloved leaf in our house.  You gotta love how when they are dry they crack into a million pieces.  Put hundreds of leaves together and now you have Leaf Heaven.

The brown and tan blanket with a lion face on it.  Soft, but somewhat ugly…the perfect blanket for taking outside and laying on the grass to have a tea party.  Abby and her two neighbor friends Ana and Lauren would take out tea (aka lemonade) and cookies (aka crackers) and giggle and tell stories. 

The snow castles made with giant buckets.  The delicate balance that Matthew would try to achieve of tipping the bucket over and getting a “perfect” castle without losing too much snow at the first tip. 

The giant mesh golf web that was converted into lacrosse goalposts so that Abby could practice scoring goals.  All that practice has led to her feeling proud to be on the first girls' lacrosse team at her high school.

The extremely ugly swing set that my Dad found at a rummage sale and repainted and installed in our backyard.  I remember the day my dad was putting it up and the excitement on Matthew’s face.  Swinging is another favorite activity!  The memory of his autism therapist teaching him his first sign of “more” so that he could ask for “more” pushes on the swing. 

When I open my eyes, I see a sight that makes my heart melt.  From out of the garage, comes Abby pulling a “too big” Matthew in his favorite, red wagon.  She is the only one who will still pull him in it!

Although my backyard might be the size of a postage stamp, the memories that have been made there are immeasurable. 


Friday, September 30, 2016

A Matthew Kind of Museum

I did a google search with the words sensory and museum.  I discovered that there are museums with sensory friendly rooms and many museums offer sensory friendly dates when accommodations are made for families with children with special needs.  Many children's museums are interactive or multi-sensory.  In fact Matthew does love the Betty Brinn Museum.  One of his favorite spots is working on the car, because he likes to change the tires and go underneath the car to change the muffler.  His other favorite spot is building with the giant Tinker Toys.  If I let him he would go back and forth between those two activities, but with encouragement he will also spend (and enjoy) some time at the grocery store exhibit and riding the pretend bus.

I also googled vacuum and museum because I had heard that there was one.  It turns out there is not one, but two vacuum museums.  One in St. James, Missouri and one in Portland, Oregon.  However, as I looked at the images it appeared that both museums were really more for looking at vacuums throughout the years that were on display. So, even though we were just in Portland this summer, it's probably a good thing we didn't go to the vacuum museum because Matthew wouldn't want to just LOOK at vacuums...he would want to TOUCH and RUN the vacuums.

So I got to thinking...what if there was a museum designed just for Matthew? With all of his favorite things? A place he would want to spend hours. This is what I am envisioning...

The Jumping Room - This room would have both trampolines and bouncy houses.  It would also have employees (or volunteers) that want to physically jump him either by taking his hands to help give him leverage or he would face them backwards so they could lift him up and jump him.

The Swing Room  - There would have to be your standard rubber swings and a whole row of them so he could go from one to the other because even though they may all look the same, they obviously don't all feel the same!  In addition there would be some tire swings and swings that you can lay down on and the big plastic kind that go up over your head and buckle you in.  And I hate to even say this, but there would probably even need to be a baby swing - but big enough for Matthew to get in and out of without getting stuck. Again, there might be two workers ready and willing to take each hand and swing him between them or grab each end of a blanket with him on it and swing him and deposit him on a couch.

The Flapping Room  - (Author's Note:  These are items that can be flapped against the chin to provide input.) So many fun things in this room.  Receipts of all different lengths and tape in case he wants to tape two together to make them even longer.  Flags of various sizes just waiting to be waved.  And objects with the tags still on them.

The Footwear Room - Amongst this interactive collection would be slippers (and people that he could boss into wearing the slippers), winter boots, rain boots, fur-lined boots, sneakers, mens' dress shoes, crocs, and sandals, just to name a few.

The Scratching Room - This room would contain wicker baskets, egg cartons, corrugated cardboard, the inside of car doors, rest mats, a few shoes from the Footwear Room and one of Rob's fleece sweatshirts.

The Vacuum Room  - Unlike the vacuum museums in Missouri and Oregon, this vacuum display would be fully interactive.  There would be lots of outlets for plugging in the vacuums.  There would be every kind of vacuum imaginable, including a wet vac (this is on his wish list right now).  There is one vacuum that would not be there though and that is the old yellow LOUD vacuum that we ended up throwing out this summer. (We are "all done" with that one.)

I'm sure there are several more rooms that could be part of this museum, but if we make it any  more spectacular, he won't ever want to leave!  He'll want to live there!


Wednesday, July 20, 2016

Double Edged Sword

Matthew has a special gift.  He has a way of making people feel special.  He makes them feel like they are the "chosen" ones.  When he slips his hand into theirs you can see their hearts start to melt.  I have several friends who tell me that "Matthew has me completely wrapped around his little finger."  or "I would do almost anything for him."

If he sees the neighbors to either side of us are on their porch, he will come over and wave and settle in next to them or on their lap.  If they are working in their yard or garage, he needs to come "help" or at least investigate!  At block parties (see this story for a block party break through - The Dreaded Block Party) he has learned to go up to neighbors and take their hand and lead them somewhere.  Around the campfire he snuggles into different neighbors and flashes his smile at them.  Just tonight he had a neighbor jumping him up and down, running him through the sprinkler, and dancing with him.

At church if you didn't know us, you might wonder which family Matthew belongs to because he likes to sit with other families.  He especially likes couples who are of grandparent age.  He snuggles in and rests his head on their arm.  One Sunday he fell asleep with his head in a lap.  After church the woman told me that her husband doesn't usually have the patience for children, but that he has a soft spot for Matthew.  Another church member calls Matthew a blessing.  He also has a way of getting people to rub his head by raking his hand through his hair and then grabbing their hand and putting it on his head.  If they are not doing it often enough he will just move his head back and forth while their hand is in place.

Herein lies the double edged sword. On the one hand it is wonderful that he is so loving and friendly.  It kind of breaks through the stereotype that some people have that people with autism are always in their own little world or not very affectionate.  But on the other hand he doesn't discriminate between people he knows well like church member and neighbors versus someone he doesn't know or is meeting for the first time.  When he were at a car dealership for several hours recently he became friends with several salesmen and sat on the lap of the young salesman in his early twenties.  During Abby's lacrosse season he got to know families from both our team and the opposing team.

I brought my concerns to his therapy team.  I want him to understand that there are personal boundaries and that we react to people differently depending on our relationship to them.  He has started working on a Relationship Circle.  Right now, he is just at the stage where he identifies where Mom goes (family) versus one of his friends from school.  As he masters those two, more people will be added.  Along with that will be learning which actions are appropriate to do with people from various parts of the circle.  For example it is perfectly okay to hug a grandma, but not someone we are meeting for the first time.

It will take awhile for him to understand all the pieces but I think it's important.  As he gets farther along in learning the circle, I will probably need to take it with me when we go places so he can be visually reminded of what we are working on.  I think it might help if I show people what we are working on so they realize why I might not let him sit on their lap or snuggle them.  It also might get a little confusing at church because even though most church members would technically be placed in the friend circle, there is the language that we are all in the family of God and that we are brothers and sisters in Christ.




Wednesday, May 18, 2016

The Power of Persuasion

In my last post, Doesn't Everybody Kiss Blenders?   I explained how Matthew uses some creative signing and methods to get his message across.  Since that time (please forgive the gap in posts!) he has been doing even more communicating in a special way at school.  Written Communication!

Here's how it works. He gets an idea and then communicates it through signs or pointing to photos on his ipad.  School staff then write his message on a card in all capital letters. They read each word to him as he points on the card and then finds the letter on the keyboard.  The particular program that they are using says the name of the letter after each keystroke, each word when the space button is pushed and the whole sentence when a period is put in.  Many times he includes a picture either from our photo library or an image search.

One of the things I really like about this new form of communication is that he can request to have it read multiple times.  (Sometimes multiple times before we make it home from school, while we are waiting in the parking lot for Abby.)  Since I know he used mostly signs to create the original message,  I have him sign what he can while I read the message.

Here are a few of the messages I have gotten over the last few months:

DEAR mom

I want 5 sandbox toys.

I really want a new shovel.

Mom could drive to Target.



I want to play with my riding toys.

I want mom to drive and buy toys.

Abby wants to sleep.  She wants a pink mat.  Mom should drive to Target.

There does seem to be a common theme...a lot of Mom driving, particularly to Target and Mom buying things.  He definitely seems to favor the genre of persuasive writing.  And if you are wondering how effective his persuasive writing is...let's just say I spend A LOT of time at Target!


Sunday, February 7, 2016

Doesn't Everybody Kiss Blenders?

What if you wanted to tell someone something, but you couldn't talk?  What if you used signs, but didn't have one for everything you wanted to say?  I don't know about you, but I think I would get pretty frustrated! I might even cry or scream!  But that's the thing that amazes me about Matthew.  I'm not saying that he never gets frustrated or cries, but it's not typically because he can't get his message across.  He is and always has been extremely motivated to communicate.  The following scenarios are just a few examples of the creative ways he lets us know what he wants/needs.  

Right around Christmastime we got a food processor.  Matthew was very excited about this new machine and of course the packaging that said machine came in.  I took our old blender down to the basement for storage.  But it turns out the blender was better for certain things like making smoothies.  So the blender was brought back up to the kitchen counter and the new food processor was relegated to the basement.  I was busy in the kitchen, but out of the corner of my eye I saw Matthew blow kisses at the blender.  I thought, "Oh my, that's goofy!"  And then he went over and kissed the base of the blender.  I called Abby over and asked her, "What is he doing?!?!"  "Being Matthew..." she replied.  Pretty soon he started waving at the blender....Lightbulb!  "Do you want the blender to go bye-bye?"  He nodded yes.  "Do you want it to go back in the basement?" Again, he nodded yes.  He followed me into the basement as I put it away.  He pointed to the food processor.  He wanted that to come back upstairs!

Early in January we went out to eat with Grandma and Grandpa.  He had unsuccessfully asked to ride in their car at least ten times while we were in the restaurant.  As we were walking out to the cars with them, he knew that he couldn't ask again so he started scratching on my hand and arm.  At first I thought he was doing it because he was upset, but then...Lightbulb!  It turns out he was trying to tell me that he wanted to scratch the inside of their car.  He likes the way it feels and the sound it makes.

A couple of weeks ago we arrived at Social Skills a little early on a Saturday morning.  We got there and there was only one other boy there.  Matthew started signing "more" and another sign that looked like water. I was confused because he didn't have any water, how could he want "more".  I watched him carefully and he continued to sign more and held up two fingers.  Then he pointed to the window...Lightbulb!  He wanted more than two friends to be at Social Skills.  Luckily, I was able to reassure him that more friends were indeed coming!

While I have received messages in his home-school communication notebook before about things that he has told them that he wants me to know, this week he took it to the next level.  He handed them his home-school communication notebook and a pencil and then signed for them to tell Mom that he wants to go back to the "jumping place".  Two days later he also told them to write that he wanted a new water noodle, an orange riding toy, and a new mat for his birthday.  Next time he'll have to give me a little more notice, seeing as he told them to write this ON his birthday!

I can't wait to see what creative ways to communicate he comes up with next!




Saturday, November 28, 2015

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!