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!

Spring has Sprung!

I just realized that the blizzard was the last thing I blogged about.  What a difference a month and a half makes!  Today was warm, windy, and a bit delightful here in Central IL.

It is finally Spring Break, much needed for all of the Plato family.  Yesterday and today, Ignatius and I ran/walked together.  Yesterday, we were outside.  Today, we went to 4 Seasons 1.  I ran the track, he walked the elliptical and treadmill.

The exciting part was that I REALLY ran.  I walked the first 5 minutes or so as a warm up (through the song, Dancing Queen), then I ran/jogged the rest through to the distance of a 5K (well, I stopped running at 3.2 miles).  It felt pretty good, I have to say.  I had been doing a run/walk for a while to save my foot, but I found today that just slowing my running pace was an OK thing as well.

The kids are great.  We had Max's IEP annual review.  That seemed to go well.  It's very difficult to plan goals when he changes so much within a year.  They are always willing to revisit his plan, which is nice.  I have to start gearing up for continuing his education throughout the summer months.  He's not always as receptive to mom wanting to do "academic" things with him.  He will be attending "Autism Camp" for 5 weeks.  That will work on social-emotional goals and maintaining social gains (I hope) that he has made this year. 

Ignatius registered for high school at Central Catholic.  He is really excited.  I find it hard to believe he is of age, but it's coming.  It hit me when we did not have to register for Holy Trinity for the first time in 9 years.

I am still crossing my fingers that the ministry at St. Pat's will catch on.  We had a meeting during "Blizzard Week," where myself and Ellen were the two participants.  We are trying again on April 9, this time offering child care and a bit lengthier blurb in the bulletin.  If that doesn't work, this just might not be the time.  But I can't say we didn't try.

So glad spring is here!  

Jack Frost Bites Hard

This week, we were visited by one of the biggest storms... ever.  See!

Now, do not get me wrong.  I love snow.  Truly.  You can't live in Illinois and hate it.  But when there's wind and ice, and snow, and subzero temps, my love is tested.

Without further adieu, here is a video compilation of the storm from here in Bloomington.  Enjoy the music, sit back with some cocoa, and be as glad as I am that it's part of history.

Bathwater

Whenever I fill my tub for a bath, I follow pretty much the same pattern.  I clean out the tub, then I start the water, double-checking for just a moment that I got all the stray hair and dust out.  If not, I stop the water and do one last sweep.  Then I start the tub with what I think feels like an appropriate temperature.  If something leads my attention away, I can end up with a scalding hot bath or a lukewarm one.  It's happened once or twice.  Since we have a large tub, there have even been times when the hot water was depleted and icy cold water was undoing any warmth the bath once had.

My school dealings with Max are a lot like this.  I worked like crazy to get him ready for Kindergarten, including therapy, early childhood, and lots and lots of social stories.  I hoped and prayed I was making the right decision putting him in when I was not 100% sure he was developmentally ready.  The tub was cleaned, I believed.

School started and some things were still floating in the bathwater.  So, we turned off the water for one more sweep.  We had an IEP meeting and tweaked some areas of concern.  Water resumed.

His return to school since winter break has been tumultuous.  He has said to me more often than not that he does not want to go to school.  He wants to stay home.  He has been refusing to do things at school, mainly in the gen. ed. classroom I fought to get him to be a part of.  Lying down on the floor.  Saying no.  And, on Friday, kicking and hitting his PE teacher.  Temperature of the water is a bit too hot.

So here we are, with a child who is cognitively able to handle the content of Kindergarten.  Has a bunch of sight words under his belt.  Recognizes and writes his name and various other words.  Can play a problem solving game on a laptop PC using its touchpad.  Simultaneously, he is showing the behaviors that I know will make it quite difficult to convince people of where he should be placed.  It's not that I have anything against the special education room.  [Ringing in my ears, Seinfeld's, "Not that there's anything wrong with that!"]  I just know that being in a gen. ed. room will get him the exposure he needs to continue his content attainment.  A separate space does not guarantee that same level.

So, I'll put my hand in the water and give it a swirl.  I'll give it some time for nature to run its course and for the water to cool.  Sometimes I do not do that.  Sometimes I get in the tub and regret it, as my skin turns a bright red and I actually sweat in its heat.  I am wondering if I did that... pushed for him to be in too much gen. ed.  Assumed that the gen. ed. situation is a strong fit.  As a teacher who teaches students with similar schedules, sometimes they are in my room, sometimes not, I know the effort it takes to make everyone feel like they "belong."  The magic does not occur without a great deal of comfort and commitment.  We decided to have a meeting in January to check the changes in his IEP on the day we made them.  So, we shall be meeting soon to determine how to get his bathwater temperature to be better.

Ironically, this week, we got the class composite for class pictures.  His class?  The special ed. class.  Now, you must understand that this is the very thing Scott said last year that he did not want... the yearbook picture of him in a special ed. class.  This is the very reason my husband did not want him on "the short bus."  No, he's not in denial.  I think he is being somewhat realistic.  Just one more way for peers to note his differences, and one more time (I know there will be lots more) for us to be smacked in the face with the fact that our child is different.  In that sense we step in to the tub after the water turned ice cold.

Well, that went well!

My meeting at my parish this morning went really well.  The outcome is that we will be doing an "all call" for parents in the parish who wish to meet about a new ministry to parents of children with special needs.  We will be meeting on February 5 at 10 AM at St. Patrick's of Merna. 

I met with Fr. Jerry, Becky, and Sr. Rita, and the things I was praying for last night truly did occur.  I learned that there are options with our parish school of religion for students with special needs, and that there is a SPEC program at Holy Trinity Church.  I spent some time relating different things that occur with the boys that stray from the typical (I mentioned about Ignatius' serving experiences and anxiety and his anxiety relating to Confirmation).  We discussed some things regarding Max's needs and how some of the parish outreach (like Vacation Bible School and Kid Spot) can be somewhat overstimulating because of the sheer number of children involved.  From several of the comments made. I really felt as though they would be very helpful in helping Scott and me decide how to proceed with Max's schooling in the Catholic faith.  Fr. Jerry was appreciative of my wanting to share these things, and it seemed to really open his eyes to the need for outreach to parents. 

So, onward I go.  I am creating a bulletin announcement for the next couple of weeks, and touching base with some of the persons suggested to me regarding the direction we take with this.  Prayers are still welcome! 

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.  

Color Me Excited!

Happy New Year to all!

My first week of 2011 will include a meeting with my pastor regarding the needs of special needs children and their parents in our church.  In doing a quick web search of what's out there, I "found" (as if it was hiding?) the National Apostolate for Inclusion Ministry.  JACK-POT!  Imagine that... others in the Catholic Church who recognize that we need to individualize cathechesis to meet the needs of  those who stray from the "norm."  Oh happy day!