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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Shelley said...

Oh Jennifer,
I can only say wow! You have such a special family & I absolutely love John's attitude about Aspberger's being what is Right w/ him! I think you need to write a book, not necessarily about this, but you are such a gifted writer. I will continue reading your blog & I will praying for you & your family & your efforts to get John the best care.
Luv ya!

Anonymous said...

Hi Jeni,
My favourite author Jodi Picoult wrote a book about Asperger's syndrome, it's called "House Rules". Don't be put off by the topic, it is a heartwarming story and I always learn from her books. She has the gift to make me laugh even if talks about serious stuff. Nicki