The second son

Just a few weeks old

Last year, I sat at the computer, trying very hard to write a loving blog post about my Winston.  I didn't expect it to be such work, such a challenge, to put together all the good stuff and leave off the bad.  I kept dismissing "He's a terror at bedtime" and "He unspools all the toilet paper when I'm not watching", thinking there had to be something enjoyable about him to share with the world.  And really, what does it say that I found it easier to think of all the things I love about my autistic son, by definition the one who should be difficult, and came up blank for his typical brother?

I'm glad to say this year is different.  I couldn't wait to sit down and put Winston together here.  Part of it is probably the difference between a boy turning 3 and a boy turning 4; there is much more participation and creativity than defiance and destruction.  But I've also given him more attention this year.  I've scheduled out the day so that he gets one-on-one parent time almost every day, and tried to make sure we do the things he likes at least as much as we do what everyone else likes.  I've purposefully scaled back the yelling.  I wish I could say I don't do it at all, but sometimes the evil mommy that lives inside me roars out and still makes tears rolls down those smooth white cheeks.  The good mommy punches her and forces her back into her cell, then scoops up 36 pounds of future man and makes the calming "shhh" noises he likes and wipes the tears.

1 year old summer 2010

A few weeks ago, we were getting ready for bed and Winston asked that I come lay down with him for awhile.  I said ok, although usually it makes him more hyper and he only really starts to settle down for sleep when I leave the room.  But I climbed in his bed and started straightening out the covers.  "This needs to be a bed, not a nest," I said in frustration.  "We are two little birds," came Winston's response.  I cracked up.  Where did that come from?  That wonderful, silly sense of humor?  Why did it take almost four years to notice it was there?

The past several months have given us the opportunity to play games together, starting with Candy Land, which my infinitely more patient husband taught Winston to play.  Then, with basic game-play established, I came in with Chutes and Ladders.  We branched out to Connect four and UNO.  For his birthday, we purchased Hungry Hungry Hippos.  I have to admit, I've been looking forward to this since I became a mom.  Family movie night.  Family game night.  Popcorn.  Candy.  Laughter.  Bonding.  Winning and Losing.  Enjoying my children.

Choking his brother to get some Sprite

Winston also loves racing.  He runs around our yard, challenging each of us to race.  I can only do two before I need a break.  Michael ambles along, outpaced in the first two steps, but determined to follow.  When we met up with friends and had 9 kids playing together, Winston asked that we establish a course, and could the others race him?  So we convinced 6 of them to make a lap around the yard, and the "big" boys (ages 5 and 6) were delighted to come in first and second place.  Winston pounded up behind them, followed by the less agile, shorter-legged competitors.  There was joy on every face as the crossed the finish line (aka, gave me a high five and jumped over a log).  Because of Winston.  I love his initiative.  I love his desire to play with others.

I also love his excitement to eat vegetables.  I have no idea where it came from.  When he sees lettuce, he happily grabs the "trees" and chows down.  It makes me look good, like I'm a mom who serves her children veggies, who maybe even inspired this behavior by eating so healthily while pregnant.  That is so not the case.  If Winston loved to eat bowls of mashed potatoes and Big Macs, then I would say, "Oh, yeah, probably because I ate so many while I was pregnant."  But lettuce?  Carrots?  I have no idea why he likes them.  His brothers certainly don't.  His father grimaces whenever forced to eat them.  His mother smiles and pretends to like the healthy stuff while secretly imagining she is biting into a molten chocolate cake.  If it weren't for Winston, we wouldn't even have that kind of food in the house.  So thank you son, for making us look good and elevating the contents of our fridge a little.

Walking for Autism September 2012

For all the ways he delights and challenges us, for the love he shows his brothers and the unique person he is, for the mind that is as quick as his feet.  For my second son, a huge section of my heart is yours.

This I Believe

" And we are not perfect.  We say the wrong thing.  We grow and we change and the words we spoke in the past are words of which we now repent, but that is the nature of sanctification and there is no one exempt from that process."  -Fabs Harford

I believe that words are important.  I believe that what we say and what we write can affect people, and it is our choice to encourage and build people up, or tear others down with our negativity.  So often, as I was growing up, my parents would admonish me to THINK before I spoke, usually as a follow-up to something insensitive or inappropriate that had just come out of my mouth.  I would sigh in exasperation, because the challenge to evaluate all spoken words before enunciating them, and discarding the unnecessary ones, seemed too much for me.  I didn't want to stop long enough to consider my words, I wanted to get them out, to share them with others and join in.  People gave me labels: I was cynical, sarcastic, jaded.

I often wrote as I grew up, I filled notebooks with thoughts and observations.  I still wonder if anyone is ever going to read those words or if they will get thrown away at some point, without being seen by the world.  I want to have influence, I want to share my mind and my feelings, but I lack the confidence that I have anything worth saying.  Then I started a blog.  I began not knowing what to write, and the first year I think I wrote 3 entries.  My husband was the only one to read them.  The next year I posted just once. 

It was surreal to find myself, this lover of words, the mother of a non-verbal child.  I yearned for the day I would hear him speak, when we could converse and share our words and learn more about each other.  It didn't come.  The doctors and the speech therapists and the educators all told me the same word: autism.  They gave other words and phrases, like developmental delay and no imaginative play and isolated and early intervention.  We started therapy and preschool and while he struggled to find his voice, I did too.  I couldn't figure out how to tell people what I was coming to terms with, the reality of having a son with a "disability".  I found myself dropping out of the mom-petition, avoiding playdates and birthday parties and listening with jealousy as the other moms compared their children's milestones.  I wondered if my child would ever use a toilet, make a friend, learn to read or write his name, much less play on a basketball team, speak Spanish, or write a play for his third grade class to perform.

I was scared for my son to receive an official diagnosis.  I was afraid of that word, afraid of what being associated with that word might mean for him.  Would he become a target of bullies?  What other words would they call him, when they saw him riding the "short bus" that is no longer short?  How many times had I made jokes at others' expense, how many times had I declared something "retarded" in my adolescent speaking-before-thinking phase?

But I came to realize its not a word spoken by a doctor in a white coat that I am afraid of.  Its what we are teaching all of our kids about words and about how we treat people who are different from us.  And that's when I found my voice.  I began sharing my opinions and stories and family with the internet, simultaneously afraid that no one would read and afraid that everyone would.  I found, through blogging, that I could form my words, gather my thoughts, and take the time to present an idea without being offensive, hurtful, thoughtless.  Although it can often be a place where people comment without any regard for the fact that a person is on the other end, reading their words, for me, the internet is the place where I finally learned to think before speaking.  I can look at a person's profile picture, I read about their struggles and hopes, and I take my time forming a response.  My hope is that what comes out is different, so that people perceive me differently.  So that they use words like "loving" and "encouraging" to describe me.

Another benefit of speaking boldly for my son and others like him, is that he is now finding his voice.  He is speaking and learning to read; he is expressing his needs and communicating to others.  One of his favorite stories is The Lorax by Dr. Seuss.  I love to hear him loudly proclaim, "I am the Lorax...I speak for the trees, for the trees have no tongues."  Where I once saw myself as speaking for my silent son, now I wonder what voiceless, invisible group he will speak for. 

Feelings

We had a parent-teacher conference in November, which was wonderful because we got to hear about all the thoughtful and understanding ways James' teacher reaches him.  How she uses visual cues to help him order his day and learn new concepts.  She recommended that we get an iPad to use at home, because there are so many apps that can help autistic individuals get through life easier, and encourage them to work on new skills.  It was a nice idea, but a pricey one, and also one without any evidence to back it up.  Okay, we could spend hundreds of dollars on a therapy tool, but what if he doesn't respond to it?  What if he just wants to play Angry Birds like he does on his Nana's iPad?  With money being always tight in a single income home, I didn't see how it would be possible.  Then Christmas came, and with it, a gift.  A great big check from Grandpa for whatever we wanted to purchase.  So, okay, we decided to get the iPad, knowing that we would all enjoy its many uses if James ignored it.  I should have known.  My husband obviously did, because he followed up the purchase with nights researching the best apps, and compiled a list.  We went through it together, after the boys were in bed, thinking about what James needed, and where he is going.  The most important was the Visual Scheduler.  An app that lets you compile lists of activities and tasks to be done, complete with pictures and sound.  Example: My Nighttime Schedule...First I can Go to the Bathroom, Brush My Teeth, Put on Pajamas, Read a Book, Listen to Music.  Each icon can be moved to the other side of the screen and the iPad says "All done".  This particular list works wonders when the response to "Time to brush your teeth!" is met with a very emphatic "No."

The visual schedule has another function called a Feelings board.  I went through and made one for each of the available emotions: Happy, Sad, Angry, Frustrated, Tired.  When James got strep throat and refused to take his antibiotic, I added Sick.  Example: When I am sick I can Rest and Take Medicine, then I can have a snack and Watch a DVD/Video.  Once again, complete with pictures and sound, we watched the Sick board each day, then explained that taking his medicine calmly meant he could have a treat...a brownie, some candy, fruit snacks.  It helped, although he still hates medicine.  When the antibiotic treatment was finished, and he was told "All done", he broke out into the "We did it" song from Dora.  But he sits with his iPad and memorizes these lists.  I hear him reciting them in the car, at bedtime.  Whenever his baby brother cries, James says, "Michael is sad.  Cry, have a hug," the options he has been given on his feeling board.  Not only is he recognizing this emotion, in both his brother and himself, but he remembers what he can do, and frequently says, "I can cry" through his own tears when something upsets him.  But the best use the feeling board has gotten happened when I was distractedly texting and he wanted me to get a toy that was out of reach.  I heard him ask, and gave the "In a minute" mumble.  We went through this a few times, as he doesn't usually let up once he has a request.  I kept focusing on the phone (not my finest parenting moment), until he opened the iPad, pulled up the app, selected "When I am Frustrated", and kept tapping the icon, so that "frustrated frustrated frustrated" finally got my attention.  I had to laugh.  I appreciate his tenacity, and also his creativity.  When one way of requesting his toy didn't work, he found another.  And yes, I put down the phone and got the toy.  I should have done it sooner, but then I would have missed his masterful display of the Feelings board.

Another Feeling is Anger.  When James is throwing an all-out, I am losing it, marathon tantrum, he likes an audience.  He likes to rage and cry and hit in whichever room has the most occupants.  This sets off Michael, who doesn't like seeing his big brother upset, and usually the duet of screaming gets to Winston, so that we have a meltdown times three.  Which is great because children crying never gets under my skin *sarcasm*.  To prevent our house from exploding every time James is upset, we have been trying to teach him to go to his room.  Alone, he can rage, he can throw stuffed animals, he can stomp his feet.  Its been hard to get him to stay in there, however, and if I'm home alone, I can't very well leave the younger two unattended while trying to help James come down.  So now the iPad helps him understand what he needs to do. 

Last week, when I had a temper tantrum of my own, I tried to explain it to him.  "Mommy is angry.  Mommy needs to be alone and stomp her feet.  Then I can have a hug and have special time with James."  He repeated my words, but didn't leave me alone.  He sat in the chair in my room and watched me.  He watched me punch the pillows on the bed.  He watched me cry out.  And every so often he said, "Mommy is angry."  Eventually I calmed down.  Eventually I apologized to the kids for losing it.  Eventually Chris came home and I went downstairs to do laundry alone.

I am no longer skeptical about the therapeutic purposes of an iPad.  I am so thankful to both Apple, for making such an effective and easy-to-use product, and to the individuals and companies that develop the apps that bridge the differences between the autistic and the neuro-typical.