Explaining Autism

If you follow this blog (apologies for my looooong absence), you know that we have had many blessings, coupled with several challenges, in this life of ours.  One of the challenges is helping our sons navigate the world as they deal with social communications disorders.

We have been upfront about Asperger's, what it means, how it manifests itself, and that my elder son deals with it on a daily basis.  Since he was diagnosed around age 10, we have been openly discussing and naming the disorder.  

My younger son was a different case.  He was only two when diagnosed, and he is a totally different kid with completely different needs.  He was diagnosed with autism disorder (they would both now be considered persons with autism spectrum disorders). We struggled to get him speaking and acclimated to advocating for his needs.  He learns very differently from his brother, and he struggles with the minutiae of the academic world.  It was difficult to determine when we should name why he had the need for sensory, why he struggles with math and reading comprehension, why sometimes kids do not want to play with him, why he repeats, shouts, and the like.  I always felt I would know when to have the conversation.  It never seemed right because he was constantly flipping out if anything about him seemed atypical.  Well, the opportunity did, indeed, present itself.  Now, my son has a name to answer many of his questions.  Autism.

In 2007, I created a scrapbook called "Speak to Me."  The scrapbook was dedicated to Max's journey through the communication struggles he was having.  Max has loved this scrapbook--honestly, he loves all scrapbooks--because it was solely about him.  He also loves that it has buttons to push and a variety of audio recordings from that time.  So, after introducing him to the word "autism," we grabbed the scrapbook (which I made before his diagnosis) and read through what was happening with him at the time.  I cannot tell you how valuable that scrapbook was to this process.  God knew.  He gave it to me as an outlet, then as a guide.

  

Does he "fully" understand the breadth of his ASD?  No.  None of us does.  It's a developmental mystery that is different for each child who is on the spectrum.  However, he almost seemed relieved to have a name for the things about him that he knows are different from the norm.  We will move onward with building his confidence in the many ways he is unique, special, and in some ways, completely typical of any 10 year old boy.  

Kindergarten Documented

Did some digital scrapbooking of Kindergarten.  Click on each for a larger view.  I left out some of the things that have already been scrapbooked and blogged.  More on my digi-process here.

Pretending

As a child of the 70s, I did a great deal of pretending.  Even though many people judged TV as the harbinger of doom that would forever change our generation into a bunch of coach potatoes, most of my friends and I played outside or at each other's houses.  What did we do?  Pretend.

We were Luke, Han Solo, and Lea fighting Darth Vader.  We were the Hardy Boys solving a mystery.  We were the Pink Ladies.  We made snow angels and chad snow ball battles.  Recent WWF moves were re-enacted (most of the time with me as the guinea pig, but I digress).

No, this is not a walk down memory lane or an intro to a lecture about the evils of technology.  It is a reflection on something VERY challenging for children on the autsim spectrum: pretend play.

Ignatius would often be seen having many worlds going on inside his head.  He would walk down a store aisle with me as his fingers were going a mile a minute making some bizarre gestures.  He understood what he was doing.  In his pre-school years, I recall a chat with one of his teachers who presented this concern, "JoLynn, he just goes over to the corner and reads."  At the time, I chalked it up to yet another characteristic of introversion, and saw nothing atypical about it.  He was just making different choices than other kids.  That was allowable.

Max made similar choices for play.  He preferred repetitive things, like his ball table or spinning the wheels on a car, or lining up pieces of a puzzle.  He was not interested in engaging in pretend play.  I had been down this road before.  Although he pretended to be at his favorite thing---a car wash---his play was repetitive.  He often wants to do these things alone.

I have to add, this was one area in which I felt a little cheated.  I LOVED pretending as a child, I LOVE to act on a stage, and I believe I became a teacher because I LOVED playing make-believe with kids.  The incentive for many of these things were my own... not requiring adult micro-management.

This week, finally, after six years, Max gave me a little gift.  He typically plays with the little rubber edges to our workout mats (they become part of the car wash repetition).  This week, they became magic wands!  We turned his dad into a stone (that was particularly fun for me).  He has also had patches of make-believe here and there that I am sure have been building through his socialization at school.

So, what's the big deal?  My personal opinion is that pretending gets us ready for the big game.  I have watched both of my kids struggle to make social connections with others... to engage in play or show they did not wish to engage in play with others.  Pretending is practicing for the multiple social mergers we all do in life.  It's a risk-free time to try out conversation and see if we can get another to play along with the scenario we are creating.

Those with kids on the spectrum are not always given this opportunity.  I appreciate the blessing.  Carpe diem!

What Seek Ye?

A few years before Max was born, I participated in a Bible study with a group of ladies in my parish.  One of the first things we were asked to do was to write a "What Seek Ye?" letter to the Lord. This was to guide our study of the book of John, the Lord's beloved disciple.  We used Beth Moore's Beloved Disciple as our guide.  Here's what I wrote, painfully unedited:

"What am I seeking?  It depends on the day.  Right now, today, 1/13/04, I seek knowledge that my decisions to NOT do certain things for the church are grounded.  I'm trying to place family first, while sacrificing things I could do.  Yet I add on more with my career without too much thought.  Still struggling workaholism, balanced with perfectionism.  I seek another child.  Just ONE more.  I seek to know why Jesus allows people who fail at child rearing to have children (and lots of them), yet Scott and I are left yearning, pining for more.  Does God know I can't handle more?  Is he trying to tell me that?  If so, how do I fill the hole in my heart?  I'm seeking to control my eating habits.  God has already placed Kim in my life to keep work outs consistent (thank you!).  Now how do I work to eat the way I know I should?  


I seek to realize and reciprocate how much Scott and Ignatius love me.  How do I show them how much I love them?  I seek wise words.  I have leadership abilities.  How am I using them?  Do I exude positivity or bring others down?  I seek to listen, to not make everything about me.  To balance, be 'understood as to understand.'  To NOT sound like a know-it-all.  To let others arrive at their own conclusions.  I seek to bury old wounds.  Let go past bad experiences.  Open myself up to the new, yet have learned from the old.  I seek to see each of my students' unique situations and bring them Christ when I can, though I cannot do so overtly in my job.  I suppose that'll do for now. :) "

I like to journal thoughts, especially my prayers, because I think the best part of the experience is going back and allowing the Holy Spirit to show how God answers prayers.  The human mind has the tendency to forget at times the most desperate of prayers.  Within that next year, I was pregnant with Max, though very close to giving up all hopes of having another child so that I could move on to other paths in my life.  I was feeling tremendous guilt over not being as active in my church as I had been accustomed to.  I was at that point feeling the burden of the many hats I was wearing, unsure of which ones God wanted on me, and not wanting to toss aside "the one."

Well, here I am again, seven years later, with that same question, "What seek ye?"  I am at the verge of asking our church to embark on a ministry.  I am willing, yet feeling inadequate, to lead this ministry.  I am seeking assurance from God that I have been hearing his calling correctly and am here to do his will.  I have not been "knee deep" in church activities for a decade, as the closer I got to the workings of the church, the more its humanity got in the way.  I preferred the unflawed version, which meant not being in the "inner sanctum."  I dropped RCIA, Ladies Auxiliary, Habitat for Humanity, Youth Ministry, lectoring, and eucharistic ministering.  My focus was to raise my child(ren) without other "things" taking up my precious time and without gossip destroying my faith.  Now, I stand on the threshold of breaking that... of asking for a ministry and being involved with its inception.  Is that REALLY what I am seeking? Isn't it enough to try to raise my special needs sons?

I have felt this voice for some time now.  It seems to be saying that there's more need out there than just my own.  The spirit moved me to persistent action, but it was not just for my benefit.  People are in need.  Parents need to know how to take a non-traditional path to forming their children's spirituality in a church steeped in tradition. 

What do I seek in my meeting tomorrow?
-Understanding: making my point known without becoming overly emotional (and thus losing credibility, in my opinion); having the people with whom I am meeting validate my perspective that a need exists
-Fortitude: to say what needs to be said, yet not alienate or place blame
-Wisdom: the ability to take what I know and "pull it out" when I need it, keeping the aforementioned "know-it-all" at bay

I want to leave the meeting with a feeling like real change can occur, that I am creating an opportunity, not a burden.  And I hope I can come away with an idea of what my part needs to be in all of this.  

Where are we now?

Several months have gone by since the first days of school and the havoc that was described.  There is much good news to share.

Max has made some nice gains.  We have met multiple times with his teachers, most recently to open his IEP to make it align more closely to his needs.  He will presently be "pushed in" the general Kindergarten for calendar time, science, journals, and centers.  They were already having him go in for calendar/Heggerty time even though it was not on his IEP.  The teachers suggested that he participate in gen. ed. science and journal time in addition to what he was already doing.

They have also gotten the ball rolling for the observations necessary to determine the level of support he needs in a gen. ed. classroom (aka, a teacher's aide).  His behavior is not an issue.  The issue is that someone needs to keep him on-task.  He will sit there, but will not necessarily do anything or say anything.  Very unlike the Max we see at home.

So, there we have it.  For now.

Max Begins a New School - A Diary of Sorts

Thursday, August 19: I attend an Open House.  I speak briefly to the general education Kindergarten teacher assigned to my son.  She explains that another teacher, his special education teacher, is a person with whom I should speak.  I do so, relaying that I am quite nervous about this experience.  She answers a good deal of my questions, and I go to the general education room, believing that it is there where I will receive both pertinent and important information about my son's experience with what I thought would be Kindergarten. 

Friday, Saturday, Sunday: I check and recheck, much in Walter Paul OCD fashion, the school website.  Students and parents in Kindergarten are to attend the first day of school for an hour.  Last names A-M come from 8:30 - 9:30.  Last names N-Z come from 10:00-11:00.  Sunday night: Generic voicemail from principal says Kindergarteners should come at 8:30, causing a small heart attack when I listen to it Monday morning.

Monday, August 23: Max has a restless sleep, and wakes up with the rash he had for a while blazing across his trunk.  Doctor is called.  I call school (a little frantic) in response to the voicemail from last night and am reassured that he is to come at 10:00.

I take Max to get his favorite breakfast and take some photos.  He's a happy little dude.  We get to school.  We have our first day of school cards ready to give to the teachers.  We see the general education teacher.  The special education room's door is closed and the room appears empty, but we are early, so no worries.  The general education teacher, along with the other Kindergarten teachers, are welcoming their classes and parents with various activities. Max and I sit in the common area watching.  A kind teacher, not any of Max's, gives us some books to read while we wait.

At around 9:55, I am brazen enough to open the door to the special education classroom.  No one is in there, but there are traces that a class has been here.  At 10:00 I go to the office.  At this point, I am getting visibly upset, as all of the other parents and kids have started their happy little scavenger hunts throughout the school.  The office assures me that the teacher will be there.  I assist Max in upacking his box of supplies in a manner that it seems like others in the room have done.  My mind wonders why, exactly he, too could not have been doing a scavenger hunt with me.

At 10:10, I go back to the office, this time, unable to hold back tears.  The principal takes me to find my son's teacher and class on the playground for recess.  They had expected us at 8:30, and "wondered where we were," but the office told them we would be there at 10.  (Yes, when we were told to be there.  You are following.)  I later wonder why one of the aides did not stay back in the room and wait for Max, since they were told he would be there at 10. We re-enter the room, where we are given a card and told he needs to put his name on it and decorate it for a magnet.  I speak briefly with the teacher and a bit more with the aides.  I await direction.  None is provided.  It appears that students are playing with different games and blocks, so Max and I follow suit.  I am told that he is cute and is "so dressed up" for school.

At 11:00, students line up at the door as if they have been doing this for quite some time.  We leave for Max's doctor appointment.

And this was the experience of my son's first day of Kindergarten.  I left out the crying I did almost all day, feeling majorly robbed of what should have been a welcoming, organized, fun morning.  I did not expect for it to be perfect.  I know better.  But I did expect for it to be MUCH different.

You see, Unit 5 keeps talking about "inclusion."  I am wondering what their operating definition is of that term.  Mine is that the students are with a general education teacher until and unless they have severe needs that make that impossible.  Their version seems to be that his general education experience will be rendered to PE, music, art, and lunch, with some centers with the other students as the teachers see fit.

Mind you, I am wounded, but not broken.  Once I can get through my feelings of sheer disappointment, we will have clarity about how this year will go in the LEAST restrictive environment for my son. 

What I did not mention was the stress of the last week with getting my own room together and getting ready for my own students as well as getting my own children ready for their new experiences.  But that's a whole other story.

On an up note, Max was diagnosed with hives and is taking an antihistamine, which seems to be giving him some relief.  A friend shared that her son had pityriasis rosea, and, when she saw Max's photo, she thought it looked familiar to what her son had.  When she described it, the symptoms sounded REALLY familiar.  Either way, he looks a little less like a leper!  Yeah!  And, when all is said and done, he did not know that his experience with his first day of Kindergarten should have been any different than what it was.  I sure did, though.

Tomorrow is his first full day without me.  There was a darling little boy named Caden in his room.  Caden likes foraging for acorns at recess.  He's a pretty cool little dude, and quite chatty.  He enjoyed my rendition of If You Take a Mouse to School.  I think he and Max will be great friends.  :)  And now, I must wrap my brain around what, exactly, tomorrow will look like in my own classroom.

On a very high note, much earlier than expected, my student teacher got to be in charge of the room today.  She did a great job planning, and I can't wait to hear more about how everything flowed.  I am SO grateful to have her!!

Same difference

When Max was just six weeks old, I remember looking at him the night before going back to work and just crying. It was too soon. I had no control over the fact that he had to go somewhere before he was truly ready. Now, five years later, I am looking at my five year old, not so sure he's ready for what's about to start. Again, this is what we can do right now. I don't want to hold him back, I just hope I am not sending him in to "school" before he's really ready. I guess I'll find out soon enough!

Summertime!

Summer is upon us at the Plato household. Memorial Day is Monday, and Ignatius has two more school days this week before he is officially sprung. Max and I are both done with our obligations of school... Max finished up ECE at Colene Hoose on May 21, and his last day at Little Jewels was Thursday. I completed my tenth year in District 87 and my nineteenth year of teaching in total. Feels weird typing that!

On Friday, Max and I spent our afternoon in the backyard at our friend, Krystal's, house. She just got an in-ground pool installed this spring, and the kids were loving it (OK, the adults were loving it as well). Here is a photo of Max exploring one of the many areas on the side of the pool.

We also met with April, our PLAY consultant, on Thursday. This session consisted of "meeting" Max where he was in play and using techniques from the program to get more out of his communication experiences. Our previous goals remain the same, and now we will be building on them:
1. use "taffy pulling:" stretch the interactions and keep them going by gently teasing or making funny sounds; this engages him and makes fertile ground for his use of language to fulfill his needs
2. use affect in voice in play; continue with simple words, no more than three words at a time; no questioning; use voice intonation to "create" a question
3. use a sense of humor, suspense, and surprise; find ways to make him laugh (pretend you are sleeping and wake suddenly when he gets close; use slapstick humor)

It really requires conscious effort to remember to incorporate this, but there are many times throughout his day that lend themselves nicely to these. Some of these are things that many parents use with much younger children. When he was "of age" for the crazy affect in voice (akin to when you play peek-a-boo with an infant), he was not engaging. So, to a degree, we are backtracking to meet him where he is and guide him forward.

The idea of using only a few words has proven very powerful, and, to those who know me, this is the MOST difficult part for me. :) I have been finding that the most frustrating times involve those moments when I am using way too many words.

April videotaped parts of my interactions with Max and will be sending me the DVD and transcript. She also gave me a DVD of our "baseline" play-based interactions from the first session. She also indicated that, from the looks of how he was engaging in problem solving, she was seeing definite cognitive strength, and she thought he might not have a struggle with the academic part of school based on what she was seeing. That was unexpected, and quite frankly, a relief. We shall see how that transpires over the next few years. She was really impressed with his problem solving ability. We spent a great deal of time at our gate in the back yard. We did "taffy pulling" to get him to express what he wanted (help with opening the gate). When we were not being particularly helpful to him, he found a nearby stick in the yard to help him in his goal. While he didn't completely open the gate by himself, he showed a LOT of efforts in trying to communicate his needs without a whole lot of screaming going on.

I realized that I was getting really good at Max's "language." However, responding to him based on what I knew he was conveying is not enough. I will not always be there to interpret for him, and he must start using words more to assist in allowing others to know his needs. As a family, we have become enablers to a degree... I think that was based on survival.

So, onward we go with our many summertime pursuits. We will be starting the summer reading program at the local library this week. I have plenty of things to keep the boys (and me) very busy!

Max's Graduation

On May 20, Max graduated from preschool. Here is a movie of photos and video from the big night.

Thirteen Mother's Days

In celebrating Mother's Day this year, I reflect upon the gift of being a mother. It can be viewed that being the mother of children with special needs is burdensome. I agree that at times, I wallow in my, "This is not fair," conversation with the Lord. However, what keeps me grounded is the belief that each mother is given her motherhood road to travel.

I think of a friend who recently relayed a story to me about his brother's wife. They found out that she, at 5 months along on her pregnancy, was carrying a child with a birth defect. There was 0% chance of survival for the baby, and the longer the pregnancy went on, the more her life would be in danger. They are devoutly Christian, and strongly pro-life, and now had to enter what I call the "shades of gray" decision about aborting the baby. Her Mother's Day this year had to have been quite a trial.

Or, there's my friend, Julia, who is FINALLY celebrating her first Mother's Day. She has waited almost two decades for this to happen, and has finally adopted her son. Her Mother's Day this year had to have been euphoric.

Our Mass this morning focused a lot on Mary. I kept thinking about how old she would have been when Jesus' public life began... mid forties. And then he was killed before she was 50, most likely. I thought of the struggles that came with her pregnancy and the raising of Jesus.

There's such a wide spectrum of reaction from women who are mothers, who fulfill the role of mother, and who want to be mothers as far as Mother's Day is concerned. Where you are in your journey has a great deal to do with the savoring of the day. So the question is, where am I?

I am truly grateful for each and every day, even the days when I was told my sons were on the autism spectrum. Sure, I would love to change the financial hurdles we have had, or the depression, or the social challenges my children face in an unaccepting society, or even (trivially) the weight gain that all of these years has seen. I won't be naive enough to say there weren't parts that sucked. However, each and every part added a learning element to my life. I think each mother faces challenges, no matter what her child is like. The greatest blessing that I have is to "change the things I can, accept the things I cannot change, and be wise enough to know the difference."

Max the Artist

Max has taken a liking to coloring on styrofoam. Here is his latest work of art.

So here we are at 4

Max's birthday was filled with all sorts of the foods he loves. Since his brother has "birthday brownies" for his birthday, Max wanted the same. He was loving on the big "4" candle, and blew it out before we even finished singing. That was Sunday, of course, because he didn't want to wait until today.

Today, we ate at his favorite place: Noodles. He loves the buttered noodles. It's ridiculous, since buying noodles at the store is dirt cheap. But we all love Noodles and Company, so why not? It happened to be right next to Krispie Kreme... and they happened to have a hot batch of original glazed coming out. Damn them. Max can eat a half dozen in a sitting if left to his own devices. I have no idea where he gets that from.

Max at two

Today's photo highlights when Max was two. So much occurred during this year... oh, so much. On his second birthday, I attended a funeral for a friend. Before this year was up, Max had been diagnosed with autism. I also had a leave of absence from school for a bit to pull it all together without completely falling apart. My family and friends were my glue. Prayer also played a large role. And this little face.

The countdown continues

Today I am highlighting Max from when he was 1. One was a hard year, as it was when we realized that he was speech delayed. He also had this head-banging issue that made it look like we beat the crap out of him. It was all self-inflicted, and he actually started it again lately. The difference is now he looks at us like, "Hey, that HURT, man!" Thank God. So here is a picture I took while saying, "I'm going to show these to you when you are 16." I call it, "Headbanger's Ball." Despite the bruises, he was still such a cutie.

Four. Cuatro. Quatre. Vier.

In four days, Max will be four years old. The amount of time he has been a part of our family will officially pass the amount of years we waited for him. Life has most definitely never been the same. So, for the next few days, I'll try to highlight a photo from each of the years he has been around. Today's photo is from his birthday... the actual day of his birth, March 3, 2005.

Isn't it just this easy to be happy?

Ah! Saturday!

My Little Fish

I just can't believe how uninhibited Max is in the pool. He's one crazy dude.

Here are some photos of him from Saturday.

You will notice that he is pretty much swimming/floating to me from the side of the pool. He loves having his head underwater and kicking.

I have also included a photo that cracks me up. We were in Bed, Bath, and Beyond, and he was walking along, one hand on his hip, the other on his chin. I love my iphone for these moments.