Saturday, February 19, 2011

Fear - Comfort - Gratitude - Faith

Last week we reserved a week at a condo in Gulf Shores, AL.  Our annual trip that began eight years ago was interrupted last year due to the oil spill.  When I started thinking about the fact that our first trip to Gulf Shores was eight years ago, my mind went back to the anxiety and fear we had about taking a family vacation that included a drive of 8 or more hours with two kids ages 4 and 6.  Most of the fear was related to Zachary and how he would handle each part of the trip.  So trouble shooting and acquisition of provisions included:

1. A picture storybook as a tool to start talking to Zachary about the trip - complete with a pictures of the house we would be staying in; waves; the beach; and all of the people who would be going with us; and a calendar with the days marked with a countdown and the seven days we would be gone marked with a picture of the beachouse.  The result of this was Zachary learning a new phrase that fueled my anxiety even more. Actually it was an adaptation of his "Bye Bye Doctor" - He repeated "Bye Bye Beach" over and over for the weeks before and the 8+ hour drive to Gulf Shores.

2. Perscription anti-nausea medicine for the carsickness that was guaranteed to hit him since he looks out of the car window and follows the things we pass with his eyes. The result of this was learning that Zachary does not get car sick but Jacob does.

3. A nonfiction book that I read before the trip was recommended by someone at Waldenbooks.  It was amazing how much the family was like ours.  Two boys, one that has autism, planning a trip to the beach...etc. As I read the result of their trip to the beach, I started to pray that this is where our families differed.  Their child did not like the sound of running water from a faucet, water going down a drain, or the toilet flushing.  They never imagined that the sound of the waves would cause the same reaction. Their trip to the beach was cut short because he just couldn't adjust.

4. A car full of everything and anything we could think of that would make him comfortable in a new place (that he may not like) for an entire week.  This included video tapes (we had already made sure there would be a VCR and TV in multiple places), the entire Thomas the Tank Engine set, books, cassette tape and headphones, his favorite snack items including popcorn, etc.

As Victor and I were discussing the details of the 2011 Gulf Shores trip, Zachary was walking around and definitely listening to every word we said.  He kept repeating "Beach in June. Mommy, beach in June."   After about 15 minutes of this, he sat down next to me placing an old plastic 4x6 photo album in my lap and started to turn the pages.  It contained some of my favorite pictures of our 2003 beach trip. 

With the first look at the Gulf and the beach that separated us from it, "bye bye beach" was replaced with "hi beach! hi beach" and for each of the next eight years we have heard "Going to the Beach in June" beginning in February. 

So curious but cautious...As soon as I saw him pick up the sand and let it run between his fingers and then saw his little toes approach the cool waters of the Gulf, I knew God had answered my prayers of peace and calm.  Watching him as he interacted with his surroundings, I had a feeling that Zachary was forming a lifelong friendship with someone who he felt an instant connection with, who understand him just as he was, and with no expectations of who he should have been.

In the above list of items, I included the popcorn (a hit for sure) but I didn't mention the two most special! His cousins, Ashley and Austin, were so excited we all got to go together and Zachary loved that he could see them everyday.  Austin took protected him and Ashley entertained him with Martina McBride songs. Michelle and Joe along with Maw and Papa Tonjes were also there with us to help with each activity.  It was a blessing to be together.

Out of all of the things we thought of as possible triggers (actually, I didn't just think about them...I had them in a list/chart format) and what we had determined to be a possible solution to minimize his fears and anxieties, the biggest issue was related to the night.  Zachary's sleep routine was still a huge problem at home as we  struggled to get him to fall and stay asleep.  Exhausted does not even begin to describe how we were feeling in 2003.  Even Jacob was being kept awake at night because Zachary would cry for hours until we gave in and let him watch TV.  So if this was a problem at home, it was sure to be worse in a different state, city, house, bedroom, and bed.  But...

...we brought along a new blanket (we called it his Beach Blanket) made by a sweet teacher and his favorite extra long pillow with the perfectly soft pillow case. Those items combined with a long day of playing with his new best friend (the Gulf) added up to a very sleepy boy.

If only I would have been able to reach inside my soul and recall scriptures of comfort that can only be found by knowing God's words, I am sure I would have trusted Him more and stressed less.  So I say a prayer of thanks to you Lord for giving me words of truth and hope, trusting me with raising three precious children who belong to you, and surrounding me with people who have taught me about what FAITH really means.

When anxiety was great within me, your consolation brought me joy. Psalm 94:19

Lesson Learned - Again

This picture was sent to me by Zachary's teacher while they were on a field trip.  As soon as I opened the file and saw his happy face, my eyes filled with tears. Zachary and his classmates went on a field trip with the other students from Cope Middle School. I don't usually share things in mass emails and some things I keep close to the heart but as an educator who works with students, teachers and parents daily, I am blessed to be reminded today that these learning experiences that seem routine reach far beyond the students and teachers.

What have I learned just from Zachary's smile in the attached picture? Victor and I should/must take more "risks" so that Zachary can experience more of what is normal for a boy his age. Over the years, we have had a habit of protecting him. It is hard to explain why we wouldn't have taken him to a 3-D movie but simply stated we are in the habit of protecting him from potential anxiety that may be triggered by the sensory components of Autism. Obviously, this is not happening by the looks of the picture or if it is, he is figuring out how to manage the emotions so he can enjoy the show. Of course, I am sure he was thinking about the big piece of pizza coming his way after the movie.

I could not wait to get home to him Friday night so he could share some details of the experience with me. That wouldn't be able to happen until after the Bossier High Basketball game where I was working at the gate.  Another teacher at Cope who knows Zachary came to the game and was able to share more details with me about what he did when he returned.  She said he kept the glasses on when they went to their club time. Without the pictures and the other details to refer to, the response would have been an echo of the question I asked.  I showed him the pictures and he got a huge smile on his face and started telling me bits and pieces over the next ten minutes.  What a joy it was to listen to him five short and quick statements with that precious smile on his face.

To sum it up...Thank you to the educators who take the risks and make sacrifices to educate ALL children! As a parent, I have learned to be more like the educators and provide Zachary with as many experiences possible so that he can learn and grow!

Thursday, January 6, 2011

Events or Routines – Bugs or Dust

Events or Routines – Bugs or Dust

So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal. 2 Corinthians 4:18

So many times I have been asked “Don’t you wish you could record everything that is going on inside Zachary’s mind?” Actually, I wish I could crawl in his brain and see what he sees, think what he thinks, and know what he knows. Even if it were just for one calendar year so that I could understand what triggers him to do certain things every year with no prompting by us and see how he sees the dust particles floating in the air that no one else can see but insists they are bugs.

After finally being given a name to associate Zachary’s delays and “quirky” behaviors with, I went on a mad dash to research all that I could. Why I bought multiple books that all said the same thing, I have no idea but I do know that it made me feel in control. I was so excited to read that autistic individuals like routines and things in an orderly fashion and may have shouted “me too me too.” Then there is the they don’t like crowds which I am certain prompted me to declare “yes! No parades necessary. I will hang with Zachary at the house.” But what are routines? Before being the mother of my autistic son, Zachary, routines were pretty much narrowed down to daily and maybe weekly. Get up, get ready, go to work, come home, go to bed and repeat the rest of the week, enjoy the weekend and start all over on Monday. Routines for Zachary definitely consist of what we all consider routines but as each year passes, I am more and more convinced for him the routines are events. Like the picture above…why is Zachary carrying around the Gulf Shores book in January? Why in late July does he start asking about his backpack? Or in October, he repeats “Thanksgiving Vacation” over and over again? You would think we have a large calendar posted in the house or that he carries one with him. I cannot explain it but he just knows what time of year it is and begins to prepare his body and mind for what is to come. Maybe I better take his cue and start those beach vacation workout videos!

Deeper readings of the details of autism caused a reaction that was more like “wow…how cool is that! I wish I could…” Of course there is the Rainman characteristics so vividly portrayed in the movie like counting the toothpicks and memorizing the phonebook in a matter of minutes. But the one that has stuck in my head and baffled me was something I first read in Temple Grandin’s book Thinking in Pictures. She explains that household electricity turns on and off sixty times each second and some autistic people see each instance of turning on and off. Are you kidding me? I am pretty certain that if I saw the lights turning on and off at a rapid fire rate, I would have a meltdown of epic (even though that is one of the 2010 overused words, it fits) proportions. But what about my Zachary? Is he one of the people who can see it? How would I know? When he was four or five years old, I remember bringing him to Benton High School with me one summer and was so nervous because all he wanted to do was turn the lights on and off repeatedly in Mr. Smith’s (my Principal) office while standing in the chair. Off course, Mr. Smith allowed him to do it and like me had no idea why he was so intent on turning them on and off 100 times. I for sure did not associate this activity with being able to see the lights flicker on and off 60 times every second.

But what about dust particles – you know…the kind you and I can typically only see when the sun light shines through your window? I am embarrassed to admit that I cannot tell you how many months (maybe years) we listened to Zachary proclaim there were bugs in some part of the house only to follow him to investigate to find no bugs. He would point and we would see anything. I would even get the bug spray and spray a little bit to try and appease him temporarily. After at least two dozen bug expeditions, we started to just say “Zach, there are no bugs.” Again I am embarrassed to admit that while there were never any bugs or anything resembling them to be seen by our eyes, to Zachary’s eyes there were an infinite number to be seen. No…not the kind that bite, sting, crawl or fly. But the kind that can only be seen by “typical people” when the sun’s rays enter through a window.

Sunday, January 2, 2011

Christmas Letter 2010 - Bonus Material

After receiving and reading our letter, a dear friend pointed out that while she loved the letter, I had left off some of the best moments of 2010. Well, consider this the bonus material for all of you who may not have received a mailed copy. If you received a copy in the mail, skip ahead to the Bonus Material section.

2010 HAPPENINGS As you read this, Christmas and possibly the year 2010 have passed, a new year is upon us and we hope your holidays and year were blessed beyond imagination! The year 2010 was anything but boring for our family. In fact, we often find ourselves wondering what the state of boredom feels like. Major changes this year included a new position for Melissa in the Bossier Parish School system where she is at Bossier High School as a graduation coach working to increase student and school performance. She continues to teach online undergraduate education courses at LSUS and is thrilled to be back in the school system where two of the kids are in school. This brings us to the next set of “majors” taking place. Jacob, almost 15, started high school this year and is on the Airline HS JV Soccer team. He is doing well in the academic and athletic settings. They are on the 4x4 block schedule and with 4 courses behind him, he ended the semester with a 4.0. Next year’s letter is sure to contain events related to teaching him to drive a car. Zachary moved from an elementary school setting to Cope Middle School and is truly blessed to be among teachers, administrators and students who have a heart for all God’s children. The Adventure Club is a treat for him and we love hearing how regular education kids plan activities for Zachary and the other special needs students. We love him just as he is and cannot wait to see all God has planned for him in 2011. Ava…school? Well, let’s just say she is in the “School of Ava” this year. For 3 years old, she is quite the director and amazes us every day with an imagination that only a child could dream up. As an example, she wanted to sit on the alligator’s lap instead of Santa’s at Bass Pro Shop (she renamed it Pumpkin Shop – pretty sure she is confusing the holidays). Thankfully, the alligators were not there the night we made the trip. There is a brilliant star on top of the steeple of Faith Chapel. It is 3D and has bright spikes coming out of it so Ava insists that it has “baby Superman” in it since it looks like the crystal thing he traveled to earth in – A sign that she has older siblings. She has added a renewed energy to our family and keeps ALL of us on our toes. Papa and Grandma T cannot get enough of her and find a lot to laugh about when she is around. With the addition of nephew number six born to John and Kasie, Ava is no longer the youngest grandchild on Victor’s side of the family. We thought there would be some jealousy shown when she saw Miles being held by Papa and Mimi Mainiero or at least when WE held him but no. She was most upset as Jacob held him on Christmas Eve.

2010 BONUS MATERIAL For the past 5 years, we have talked about getting either a boat or a pool and have debated both sides of both options atleast 100 times. The chosen summer vacation spot of Gulf Shores, AL was sadly interrupted by the oil spill. Knowing that Zachary would not quite understand "Yes, we are here at the beach but you cannot get anywhere near the water," we cancelled and decided to go to Lake Greeson in Arkansas which finally prompted us to take the plunge and buy that boat. Victor apparently did not believe me when I told him I knew how to drive a boat and provide some fun for any tube rider - no matter the age or gender. After the requested leisurely tube ride for me and Jacob turned into a stirring ride on the wakes of the Crownline, I had a temporary lapse in judgment and did not follow Leviticus 19:18
where we are commanded with "Do not seek revenge or bear a grudge against anyone among your people, but love your neighbor as yourself." Off I we went with Jacob and Victor in the tube and me at the wheel. As you begin to imagine what happened next, let me just say that it ended with me behind the wheel of the Ford and Victor navigating us to the DeQueen, Arkansas Hospital ER. It would be much more pleasant for me to tell this story if I was the one that needed to be seen but I readily admit that Victor was injured to the point of tears and not feeling much like doing anything including breathing. However, we were provided with free entertainment as we waited in the large examining room with all of the other patients needing to be seen. The DeQueen ER is more like the Mash facility than anything I have ever seen but imagine the Mash characters transplanted to the Beverly Hillbillies or something like that and you will have a pretty close picture. Problem...much entertainment = much laughter but because Victor's final diagnosis was two cracked ribs, the laughing was yet another reminder that I did not follow the Lord's command to not seek revenge. The Veggie Tales song that they sing at the end of each video kept ringing in my ears "And so what we have learned applies to our lives today, God has a lot to say in his Book!" Apparently, not only is Lake Greeson just like glass, it happens to be like concrete when you are thrown from a tube going somewhat fast across a wake that was recreated in the same spot over and over by your revenge seeking wife. Thankfully, Jacob was only shaken up and Victor healed. Oh...did I mention this was day one of being on the Lake for a five day trip? All ended well and Zachary (our waterboy) LOVED the water, kneeboarding, and tubing more than I have seen him enjoy anything in a long time. If you noticed in the Christmas pictures, Santa brought him a new kneeboard that he cannot wait to try out in a few months. I am inserting some pictures below that speak for themselves. Well, maybe one needs explaining - the one with the person kneeboarding backwards, is Victor AFTER the broken ribs. Like I said, he healed quickly and was determined to get some activity on the water before we left.

AH-HA This fall, I (Melissa) had the opportunity during an interview for an article to sit down and talk to a friend about our family journey. The title of the column is “Faith Under Fire” and for the November the theme was Thankfulness. We talked for over two hours and I shared ALL of the main events beginning with when Victor and I met through the present time. Throughout the interview, I had several “ah ha” moments where God seemed to be saying “see, I told you there was a reason for…” I realized that while I have told many of the stories about our family walk with autism and journey to find the kind of faith that is made stronger because of struggles, it was the first time I had shared them in sequential order in one sitting. I was so worn out from the emotions and realizations that I felt I owed the interviewer either a payment for therapy services or an apology for the random tearful moments.
COINCIDENCE? We have all heard and probably said “wow, isn’t that a coincidence.” A short list of events in our family that may be seen as just coincidence: God placed Zachary in a family of educators, I was put on bed rest when I was pregnant with Zachary which led me back to the field of education, I was not selected to teach at the first school where I interviewed, I was chosen to teach at a school with an amazing group of educators (some are now teachers at Zachary’s middle school), one administrator who cultivated seeds of faith (who now happens to be an administrator at Zachary’s middle school) and another who shared his personal struggles of having a grown son with autism while giving me the “do whatever you have to do to help your son” advice on a daily basis. When each of these and countless other events happened, they seemed to be coincidental, independent and random. It is not until I looked back to see God’s hands in all of the little details that I was convinced with Him there are no coincidences and the word random is meaningless.
JOY In Kid Zone, the virtue for December was JOY - finding a way to be happy, even when things don't go your way. Not only must we be joyful, 1 Thessalonians 5:18 commands us to give thanks in all circumstances. Looking back on how we responded to Zachary being autistic, I can assure you that I was not joyful and did not give thanks. People would try and comfort us with words like “God does not give you more than you can handle” and “that which does not kill you makes you stronger.” I had heard and read scripture like Romans 8:28, Jeremiah 29:11, Philippians 2:13, Proverbs 19:21, Psalm 121, and Philippians 4:6 several times. All of that to say we knew a lot about what the Bible says for us to do but were failing at following His commands. I knew my life was not mine to plan and after many failed attempts of trying to navigate alone through the struggles that hit our family, we joined a church family where we learned about “troubled grace” and how to look to the Cross for strength and understanding. Yes, it is still hard sometimes to have joy and give thanks but when we do, the rewards are great!
EMMANUEL The celebration of the Birthday of Jesus Christ combined with the realization that the first decade of this Century is coming to an end has caused us to pause and reflect. This is probably why we were guided to write a letter that is less of a newsletter and more of a testimony and share how we moved from the pitiful state we were in ten years ago, as we tried to navigate life alone, to where we are today. We know this was only possible because of a relationship with Jesus Christ and being part of a community of believers who walk with us as we seek to grow closer to Him. Emmanuel, God with us, is all we need as a reminder to be joyful and give thanks in the circumstances that are all part of His plan. Blessings to you and your family in 2011 and may your lives be filled with joy and thankfulness.

Victor, Melissa, Jacob, Zachary, and Ava Mainiero

Monday, December 27, 2010

Connect the Dots

Remember the activity books that had connecting the dots pages? They are great for teaching kids number order and recognition. Did you ever complete one and realize that you missed a number somewhere along the way and the final picture just didn’t look right? At that point, what did you do? Go back and erase all of the connections so that you could pick up the one missed? Ignore the original connection that was made and just add a new one? Or maybe you would just tear that page out and pretend you never tried it in the first place? I will let you guess which option describes my choice and share that when considering the activity pages of life, the method doesn’t matter because nothing happens due to our own hands. Yes, we do often miss a dot because of a choice we made or for whatever reason but He is there waiting to redirect us so that in the end the picture that remains is a perfect design reflective of His plan for our lives.
Proverbs 19:21
Many are the plans in a person’s heart, but it is the LORD’s purpose that prevails.

Saturday, November 27, 2010

Reality Hits

Over the years and not unique to me I am sure, I have had these moments when reality hits like a ton of bricks. Sometimes, I even think I feel the brick hit me upside the head but thankfully I am not knocked out (at least I don't think I am). Tonight included one of these moments. Victor is usually the one that says "Melissa, Zachary is ready for use to tuck him in and say his prayers" and then we both go in his room sometimes together and sometimes on our own to kiss him, recite his prayer and say goodnight. Tonight Victor was settled in to a spot where his back is in the least amount of pain and I was working in the kitchen. I realized that it was that time of night that we usually go into Zachary's room for our night time prayers so I went to his room and saw that he had already fallen asleep. I kneeled beside his bed staring at the sweet boy who is no longer a little boy but growing into a young man way too fast for me. Still kneeling beside him with my hand on his sweet face, I said his prayer (the one he has said since I can remember) over him as he laid there so peacefully:

"Dear Jesus, Thank you for this day. Stay in my heart and from my head to my toes. In Jesus name we pray....Amen."

I kissed his forehead and left his room with those bricks hitting me in the head as the reality that he cannot stay little forever even though life for him as a child would be so much easier than that of an adult. Yes, that is the reality that I see. After all, isn't life as a child easier for anybody? And even more so for someone with a disability? But...I cannot keep him young, stunt his physical growth or even lie about his age. However, I can remember the baby he was and look foward to the life WE will have with him as a teenager, young adult, grown man, etc. while helping him each step of the way.
My prayer tonight as I go to sleep will be:
"Dear Jesus, Thank you for these days and for the days to come. Stay in my heart and the hearts of my family and all those who meet them now and in the future. In Jesus name we pray. Amen."

Friday, November 19, 2010

Connecting the Dots

After being asked to sit down for an interview that would produce the content for the "Faith Under Fire" column written monthly by a close friend who already knew a lot of the little pieces of our puzzle, I prayed that my heart would find words that reflected the thankfulness and joy that I feel but not mask the pain and loneliness that was present before faith was found.

Since the article went to print, we have received messages from countless family, friends, acquaintances and strangers. It was easy to tell the diversity of contexts in which they read the story and have shared their messages with us. After reading the fourth or fifth message, I realized that each time, portions of the lyrics below were going through my head hours later.

1st: "now I'm found"
2nd: "now I see"
3rd: "my fears relieved"
4th: "my chains are gone"
5th: "unending love"
6th & final: "the Lord has promised good to me"
and then a whisper probably not the exact translation of what God said: "Nough Said!"

Once again, God knew it was time for me to be able to sit down in my impromptu free therapy session with Dianne Howell and tell the story from beginning to present. Sitting for three hours to share over 13 years of events that turned into a game of connecting the dots caused some tears to be shed for the first time and "re shed" for the 100th, old wounds to resurface, and visions of lost memories to enter my heart and mind. While this may sound painful at first glance, this game of connecting the dots opened up a whole new and exciting chapter of our lives as a family of five. New roles to play, paths to chart, goals to conquer, etc.

Thank you to our God, our family, our Church, and our friends for helping us at each dot....

Amazing grace
How sweet the sound
That saved a wretch like me
I once was lost, but now I'm found
Was blind, but now I see
'Twas grace that taught my heart to fear
And grace my fears relieved
How precious did that grace appear
The hour I first believed
My chains are gone
I've been set free
My God, my Savior has ransomed me
And like a flood His mercy rains
Unending love, Amazing grace

The Lord has promised good to me
His word my hope secures
He will my shield and portion be
As long as life endures

The earth shall soon dissolve like snow
The sun forbear to shine
But God, Who called me here below
Will be forever mine
Will be forever mine
You are forever mine

For my out of town friends and family: