Saturday, June 9, 2012

Asking the hard questions, Part 2




Have you ever been in the ocean and braced yourself for a wave that is about to hit you?  A wave that looked small? A wave that you could see coming? A wave that knocked you down because you clearly underestimated its strength?

My wave was YES.

Autism. His teacher thinks he has autism.

My mind flooded with all of our excuses for his behaviors, with questions about why no one cared to mention this sooner, with the realization that we had lost a valuable year of early intervention if this was the case...I flashed back to my courses as a Music Therapy major at FSU. I vividly remembered two things from a course on Special Education that I took my senior year, preparing to work with the children of other people:
1.  a vocabulary word (term), "chronic sorrow," which refers to the long term reaction of parents who have a child with a disability.
2. The name of a book, "You Will Dream New Dreams".

The new wave I felt was NO.

No, I will not dream new dreams for my son. I want the dreams I have in my heart right now. I want the dreams that I wrote out for him in a letter on his first birthday & put in his baby book on the page "A Letter from Mommy."

And chronic sorrow? Nope. Not something I wanted to become acquainted with, except possibly being sensitive to this when dealing with other people that have special needs children.

And then the waves really started to pound me.

Guilt. Did I do something during my pregnancy to cause this?
Anger. Why me? Why my son? 
Confusion. God, I don't understand? I prayed for this child. I struggled with infertility. And while he was being formed, I specifically prayed against many things, including autism. Why?
A little wave, hope. This isn't a diagnosis, just a theory...right?

And then it didn't matter how I felt at that moment because my tears washed my mommy-goggles right off. The rest of my questions had a purpose- how do we get him the help he needs? What do I do first? I knew the teacher was right. He was clearly high-functioning, but autism made a lot of sense.

"High-functioning" became a life preserver that I begged others to throw to me as I talked to the pediatrician, former and current teachers, the director of his wonderful school that cried right along with me, my friends... really, anyone who needed to know about our suspicions. For whatever reason, it softened the blow of the "autism" label.

The "A" word was one of the hardest things to get over at first. When I think of autism, a few pictures come to mind: "Rain man" and an image of a robotic child, sitting alone in a corner lining up toys. That wasn't Jacob.

But we started the testing process. After requesting an extra long appointment with the pediatrician, we got a referral to UF's CARD (Center for Autistic Research and Development). It took me 6 weeks to fill out the enormous packet of detailed information on Jacob. My crazy scrapbooks, baby books, and calendars that I spent so much time on (see my post "Why do I do it?") really came in handy! But there were still questions I didn't know the answers to. (How many moms out there know the exact month that their child was able to walk up the stairs? able to walk up the stairs without stopping on each step?) We were put on a waiting list. 

Then we started testing with Duval County. More paperwork. After our first set of 2 hours of non-stop testing, the speech pathologist and psychologist came back into the room to give us their results. 

"We see autistic children all day. Jacob does not have autism. We think he has ADHD."

What? I tried very hard not to make excuses for him, but I knew better. I am a teacher. I see ADD and ADHD all the time. Jacob does fine in all sorts of situations where he needs to stay in line, sit in circle time, and so on. He can be crazy but he is a 4 year old little boy. And this diagnosis didn't explain any of the sensory issues that he had with loud noises, bright lights, food textures. And even though he was fully potty trained at home (even through the night), he still didn't want to go at school. 

They were the professionals and they were wrong

I could have run with their diagnosis, away from the terrible A word, and back to the doctor for medication. Meds help lots of kids. But they were wrong. I came here asking the hard questions and I wanted the truth, regardless of what it was. I can look back now and see this as a defining moment in our lives and, even more so, as a mom. 

I asked for more testing. 

We got it. The next day we came back for an ADOS, a diagnostic screening test for autism. Red flags popped up all over the place and after many, many more tests, they told us what we already knew. Autism, not ADHD. High functioning (woohoo!), mild, but on the spectrum. 

My son has autism. Oh, I just hate that word. Autism. I hate telling people that he has autism because I know what images come to mind and they don't begin to capture everything my creative, affectionate, talented, intelligent little boy with the same cool, spiky blonde hair really is. 

But if there is anything I have learned as a Potter-file, it is that, "Fear of a name only increases fear of the thing itself." And 2 Timothy 1:6-7 reminded me that, "For God hath not given us a spirit of fear; but of power, and of love, and of a sound mind." 

Fear is a liar that I don't have time for. 

Fast forward: After months of behavioral, developmental, and occupational therapy, I've started to see major improvements in Jacob. I'll revisit those months in my blog later. We're starting Round 2 of the diagnosis with CARD (after spending 10 months on the waiting list) for an official medical diagnosis.
But today I just want to celebrate my little graduate, who will start regular kindergarten (with some extra services) in August. I am so proud of how far he has come in such a short time and grateful for the privilege to be his mommy. 


  1. Love, love LOVE reading your post, Kim. God, no doubt, chose you specifically to be this special little boys mommy. Well done!

  2. "Fear is a liar that I don't have time for. "

    I love this! I love your spirit. :)

  3. Amongst all of your God given talent and skill... I love reading your blogs...

  4. Kim, I am so proud of you, you have such patience,love and understanding Jacob could have never made the progress he has in his short life without all your caring and love. Your are such a wonderful mother!

  5. My first comments! Thanks for taking the time to read my blog. I appreciate the support and kind words. :)