Monday, January 23, 2012

True Test of FAITH

As I lay in bed after my son Caleb was diagnosed with a severe form of autism called pervasive developmental disorder, I felt an emotional, even spiritual struggle stirring inside of me. WHY had this happened? Was this MY fault? Was I being punished somehow for past sins? There was a deep anguish inside of me that few will ever understand. My heart hurt. My soul ached. I had cried and cried, and cried some more. My faith was being shaken at the very foundation of everything I had believed. 

I had been raised in a Methodist Church, and my mother taught Sunday School. It was not unusual for us to occasionally have my own mother as our Sunday School teacher on a Sunday morning. I continued going to church through high school, and even found a local church near campus where I attended college at Alfred State. In 1988 after attending Victory Baptist Church, I accepted Christ as my personal savior and was baptized in the spirit. My husband and I met at this church years later. When Caleb was diagnosed  we were attending First Bible Baptist Church (still are). It is a very large church. 

I believed in a God of love and mercy. I could not wrap my head around this being GOD'S WILL for my son to have autism. I spent countless hours laying in bed, praying, and crying. I asked the Lord to explain to me, to show me somehow... WHY THIS WAS HAPPENING..... "Lord, it would be so much easier if I knew what your plan was...".  I had a hard time believing that the Lord I knew for so long, could do this to an poor, defenseless child. There HAD to be a reason.....I just did not know what it was. 

Only a mother/father with a child with a disability will ever understand this feeling. HELPLESSNESS AND ANGUISH. What do I do? What should I be doing that I am not? The hardest thing to accept with an autism diagnosis, is not the autism itself. Its the uncertainty of what the future holds. Honestly, if it was not for my faith in the Lord, I am not sure I would have ever made it. Was it the most difficult thing I have ever done? ABSOLUTELY. Was it the biggest test of faith, patience, and determination? OH MY...YES!!!

Sometimes the LORDS answer is ....WAIT. Take one day at a time. Keep going forward. When you think you do not have the strength to go on... YOU DO. There are a few things I did not realize, and might not be obvious to you either. The LORD would have never placed this situation in your life, if he could not GIVE YOUR THE STRENGTH TO HANDLE IT. The Lord CHOSE you to parent this child/children with a disability, BECAUSE YOU ARE A SPECIAL PERSON, and HE knows you can handle it!

Cling onto your faith! If your not a spiritual person, you should think of joining a local church. They can be a tremendous support emotionally. It will help uplift your spirits, and build your strength to handle what is to come the following week. If getting to church is an issue, there are many church sermons online on itunes that can be loaded onto your computer for free or can be streamed without downloading.

I lived in uncertainty, for many years. I now know patience.I have seen Gods Glory. The LORD has revealed his purpose of all this happening, and the LORD is directing my life  (in directions I never dreamed it would take me). Most importantly.... Caleb is OKAY. Last June he graduated from high school with his classmates, earning a regular high school diploma. He is now attending Monroe Community College and is in his second semester.

Lord knows that I wished I had known it would turn out this way, when Caleb was banging his head against the living room walls, unable to tell me what was wrong. I was terrified he would knock himself unconscious, or end up with a concussion. I wish I knew it through the never ending temper tantrums, biting fits, and constant safety concerns. Especially, if I took him into a store or even a McDonald's he had never been to before! I wish the LORD had told me this when he wasn't speaking at 5 years old, and still in diapers in THIRD GRADE... The plain fact is this.... I WASN'T MEANT TO KNOW THEN....MY FAITH WAS BEING TESTED....My job was to wait....

I can not even begin to explain the series of emotions seeing my son walk across that stage last June at Greece Athena High School Auditorium (he attended Greece Olympia, ceremony was at Athena) to receive his high school diploma. For the first time in 14.5 years, I KNEW everything was going to be okay. HE WAS GOING TO BE OKAY. Everyone around me in the auditorium stared at me as I bawled when they called his name. Honestly, most people would have thought someone had died. Even my three other grown children (and their significant others), looked at me with an odd look, wondering why I was crying. I could finally let go of all the worry, uncertainty, panic, anguish, I had carried around all those years. Even my own children just did not understand....

At that very moment, I wanted to get on my knees and praise the LORD. I didn't because I was already making a scene bawling in the seats of the auditorium. People around me stared at me. They had no idea what it took to get to this day.....I HAD TO WORK HARDER AS A PARENT, AND CALEB HAD TO WORK HARDER AS A STUDENT.....than those parents who were probably staring at me, wondering what in the world was wrong with me. I didn't care,  they could stare. I had waited for so long... wondering if this day would ever come! AND HERE IT WAS!

I told this that those of you who think you can't go on... YOU CAN! Those that think that the Lord is not hearing your voice HE IS. Sometimes the answer is simply....."WAIT...let me show you what I CAN DO!"

There are some things, we are not meant to know the answers to. Sometimes we are blessed to eventually have the answers we are seeking, others have to wait to ask the LORD when we see him face to face. But for all of you out there....who know how I felt, and feel this way NOW.. hold on...YOU NEVER KNOW WHAT THE FUTURE HOLDS.

Saturday, January 7, 2012

Caleb and his Ice Cream....

My husband and I stood in the developmental pediatricians office.. STUNNED and Overwhelmed.  We had so many questions, and few answers. Suddenly everything was in slow motion. I could hear the words being said to us, but for some reason it didn't seem real. It was as if I was stuck in my own personal nightmare.

My husband and I were at this appointment with a representative from the Early Intervention Program. The developmental pediatrician started talking straight to this representative, in a bold, and insistent way.  Dr. Hyman started outlining in great detail all the services she was prescribing for Caleb, and that he needed a classroom NOW, and this lady had exactly one week to find one for him, or she was going to answer to HER.

As she was describing these treatments, I quickly became lost in the conversation. Dr. Hyman started rattling  off abbreviations that I had never heard before. She wanted OT, PT, Speech Therapists in the room with him at all times, a 8:1:2 classroom with 1:1 aide, sensory integration mind was SPINNING... I had no clue what any of this was, and did not want to interrupt the discussion with the intervention worker to find out. I WAS SO LOST, CONFUSED AND SCARED....

As we were leaving the developmental pediatricians office, the intervention worker informs us of the next step. Observing and choosing a classroom. She proceeded to tell us that we would have appointments set up to go visit various places throughout the city, and we would pick the one we thought Caleb fit into best. All I could think of was....What exactly do we look for? I had never done this before! How do we know which class is the best one for him? Shouldn't someone help us with this? I was praying for some kind of sign, to signal me which one was the right one. I came to know later, exactly how crucial appropriate classroom placement was.

My husband and I went to three classrooms before we saw the birth to three class at Monroe #2 Boces Program. (We were instructed to take Caleb to each facility and observe how he responded in each environment). We were running out of options and would have to make a decision soon. We had not seen anything extraordinary up to this point. NO SIGN....

We first enter the classroom, and we were greeted politely by the teacher, and she introduced herself, and squatted down to the floor to be eye level with Caleb and greeted him with a hello. As the teacher was telling us details about the classroom the aide was with the other seven children and started gathering them around a table. She then raised her voice slightly and said:

"CALEB! We are going to have ice cream for a snack, would you like some?" HE DID NOT RESPOND.. NO REACTION at all.  At that time, he was nonverbal, and Caleb did not acknowledge the presence of anyone he was not intimately associated with. The reaction was not a surprise to us.

The aide, when not getting a reaction from him then said "CALEB... if you would like some ice cream, you HAVE to sit at the table with everyone else." NO RESPONSE. NO REACTION...

The aide, then set a bowl of chocolate ice cream with a plastic spoon in front of an empty chair. "Here you go Caleb, Here is YOUR SNACK, but you HAVE to sit at the table." Caleb stood there, no reaction. Caleb then proceeded to wander over to the table, sat down, and had his snack. WE HAD FOUND THE PERFECT PLACE. THIS WAS IT!!! THIS WAS OUR SIGN....

We called the Early Intervention worker, informed her of our classroom choice, and she set up transportation for the following Monday. Caleb was only three at the time, and would start school doing half days, and travel in a small bus with a car seat. I was dreading putting my baby on a bus, and was not looking forward to it.

The first day of school was always an emotional one, but he was only THREE..and so little. Just the thought of it, would make me start to get emotional..... This was a new world now. Our life FOREVER CHANGED BY AUTISM....