Monday, August 27, 2012

Calming the Storm

Wow. That's all I can say. In the past week, I have been blessed with an overflowing of love and support from so many. It's been quite humbling to receive all your emails, Facebook messages, phone calls, etc. I am beyond touched. I aplogize that I have not gotten back to all of you. As much as I covet and love all your advice and personal stories, it became overwhelming at times and I have had to step back intermittently for breaks. Thank you for your patience and understanding.

This past week has been a roller coaster of emotions. Even though I expected the Asperger's diagnosis, it took a while to sink in that we had graduated from "possibility" to "reality". James, especially, has had a more difficult time processing everything. Unlike me, he didn't see the signs as clearly and really did not believe there was a diagnosis to be made. Therefore, it came as quite a shock to him and the reality of it took its toll on both of us. I shed a lot of tears last week.

I am in the process of setting up all the necessary meetings with the school district in order to accommodate John's unique learning style. It's an arduous, lengthy process. The paperwork is both daunting and redundant. I find myself in a position of uncertainty and unfamiliarity. It's uncomfortable and I don't like it. The meetings ahead are also intimidating. Praise God my mother, who has been a teacher for nearly 30 years, speaks the "code" (the endless series of acronyms that the legal process uses) and has offered to attend the meetings with us to translate and assist. The process is tiring and I worry that John will struggle until we can get these steps in place.

I spent a good deal of time this past week researching and learning what I can. At times I literally had to walk away from the computer. The information (thankfully) is abundant and it was overwhelming sifting through the various websites and documents and making sense of what did or did not pertain to our circumstances. We are blessed that John is very high functioning, but in some ways, that seems to limit the number of options for therapy available to him. Add to that the difficulty of finding a reputable facility near us that accepts our insurance and offers the type of help that John needs – it seems an insurmountable task. After days of combing the internet and numerous phone inquiries, I came up empty-handed and felt quite defeated and discouraged. I still do. There were several times I wanted to quit searching and go back to the status quo. For John's sake, that's not an option. I did, however, give myself permission to abstain from research or discussion of Asperger's for the better part of the weekend. My mind and heart were weary and I needed a break.

Friday night, we sat John down and told him the diagnosis. We both felt it was in his best interest to understand why things would be different this school year and he would receive some special assistance prior to the start of school today. The main thing I wanted to convey to him was that he had no need to be ashamed or embarrassed. This is the way God made John and he is perfect in God's eyes. I began by telling John that God had given him a most special gift. God had given John a special mind that was able to think in ways that his Daddy and I and others cannot. John is able to perceive information differently that most people and that makes him special. I explained that he had an Asperger's mind. His face scrunched up. “That's a funny word. What does it mean?" he asked. I gently but firmly said, “John, you are not sick. This is not a disease and you are not going to die. You don't have to take pills for this or get shots. This is simply how God made you. He chose you to have this special gift.” 

I told him how it was the Asperger's that was causing his difficulty concentrating and why he got so easily frustrated. I noticed his eyes begin to well up with tears and his face started to crumple. In that moment, my stomach dropped. Had we made a mistake? Was it wrong to tell him the truth? I asked him what was wrong; what he was thinking. He looked up at me and asked, “Mom, is the Asperger's why I am different from the other kids? Is that why I'm not good at certain things? Is the Asperger’s what's wrong with me?”

I was just about to reassure him that nothing was wrong with him, when he suddenly broke into a smile and added, "Or should I say… what's right with me?!?”

I knew then that my son will be just fine.

He asked a few more questions before I kissed him good night, and as I turned to leave the room he suddenly asked, “Mom, am I allowed to say Assperger's or do I need to call it Buttperger's?” He was totally serious. I don't think I have laughed that hard in all my life. Thank you, Jesus, for giving us calm in the midst of our storms.

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Tuesday, August 21, 2012

Beauty From Ashes

Life isn't fair. We learn that as toddlers and life continues to prove the point repeatedly as we mature. As humans, we plan our lives exactly as we would chose them to be, but, inevitably, we are thrown curve balls that alter the dream and paths we hoped to follow and we must build new dreams and alternate paths to achieve them.

Yesterday, life threw our family such a curve ball. It was not totally unexpected - at least on my part. But somehow, hearing it made official, seeing the words written on paper, was more difficult that I anticipated. I have suspected since he was four months old. The clues were there. The signs were there. But it didn't have to be real because no one had officially "made it so". Now it is official.

My son has Asperger's.

Asperger's syndrome, also called Asperger's disorder, is part of the Autism Spectrum and is a type of pervasive developmental disorder (PDD). PDDs are a group of conditions that involve delays in the development of many basic skills, most notably the ability to socialize with others, to communicate, and to use imagination.

Hearing those words from licensed professionals; seeing them written in black and white… suddenly, all the original dreams we had for our son changed. It hurts. I don't know how to raise a child with "special needs". I don't know how to protect him. I don't even know how to tell him. I only have nine years til he moves out of my house and goes off to college. Nine years to teach him how to deal with a world that he sees completely differently than me. Nine years to teach him how to break through his own barriers and become a functioning member of society - a task that is counter-intuitive to the way God wired him.

But God did wire him.

My son is made perfectly in God's image. God loves him even more than I do and He has plans for my son that even I cannot fathom or predict. My heart is broken for my son and the difficult road ahead for him. My heart breaks for the nine years we did not have a diagnosis and he struggled to function the way he thought we expected him to. My heart breaks for multiple times in the last nine years when I, his Mommy, did not meet his needs or respond in a way he understood. He must have felt so alone at times. My heart is breaking over the label "special needs" that will be written on school forms from here on out. I pray his self image never suffers from these words on a page. My heart is breaking for his lifelong challenges with finding and building relationships. I pray God puts loving people in his path that will love my son because of who he is, not in spite of it. I pray God helps my husband and myself find equal ground in the days and years ahead so that we can be a united front and a safe place for John to land when he needs it.

Our family is embarking on a new journey. My son hasn't changed, but our understanding of him has. His world hasn't changed, but now we will (hopefully) be able to provide him the tools to navigate it more easily.

There are so many people out there so much farther long in this journey than I am. I welcome and covet your insight and any tips that have helped you guide and raise your children. What worked, what didn't work, what resources or therapy were most helpful?

Lastly, please pray for our family, especially James, myself and John, as we re-learn how to relate to each other and seek appropriate outside therapy and resources - that we would be guided to the right places.

God does not make mistakes. My son is a perfect example of God's beauty displayed differently than what is perceived as "normal".

I LOVE hearing from you!! To leave a comment, simply click on the word "comments" below this post, just under my name!