Friday, June 29, 2012

Welcome to the Bat Cave

I am sitting in a room that I have only seen in movies and police shows. There is a large two-way mirror so that I can observe what is going on in the other room.

It is a 12x5 space (that I will generously call a "room") and is packed with chairs and rubbermaid bins. I have to sit in the dark and listen via a tiny speaker.

There is a piece of printer paper taped to the wall that reads, "Welcome to the Bat Cave" above the Batman symbol. I am neither encouraged nor amused.

I am watching Jacob go through another battery of tests to confirm his autism diagnosis. This time we are dealing with the medical specialists at UF's Center for Autism Research and Development (CARD).  
He is there for an I.Q. test and an ADOS (Autism Diagnostic Observation Schedule). 


Something inside one of the rubbermaid bins has just "mooed" at me. (Okay, that was funny.)

During the I.Q. test, he is asked to identify objects, follow increasingly complex instructions using manipulatives (i.e. "Give me the horse... Give me the house before you give me the tree."), and match cards with 4 choices. The instructions are minimal and even I had a difficult time figuring out what they were asking him to do when presented with the matching section.

As he took the test, I found myself mentally yelling the correct answers at my little boy from behind the glass, as if I could raise his I.Q. score by the sheer force of my will.

Flashback: I am standing over a bassinet watching my 4 day-old son sleep. I should be sleeping, too, but I cannot stop watching him. I am terrified that he will just stop breathing without my continued presence willing it to continue.

Maybe this is why the Bat Cave sign bothers me. I have no super powers in this room. I stop listening to his answers as the questions get harder.

Then we are moved to another room for the ADOS. I have been through one of these before, so I know what to expect. There is a therapist in the room that sits in the corner taking notes while another plays with Jacob in a scripted fashion. As I walk him to the new room, he grabs my hand and says, "Don't leave me."

I leave him.

I pick up the pieces of my heart and get settled into another observation room. It doesn't start off well and I immediately start to see what they see. A sweet, slightly stiff little boy. Just enough avoidance of eye contact to raise concern. A reluctance to answer questions that are not repeated or rephrased so that he can understand them.

And then something wonderful happens. My Jacob shows up.

He is delighted to find a remote controlled bunny under a cloth, which he figures out how to work by himself. He tells the therapists, without prompting, that bunnies are his favorite animals because they are so soft.

He shows off his new, light up Buzz Lightyear shoes.

He throws a birthday party for a family of dolls, complete with a play dough birthday cake. When told to "feed the baby the cake" and is handed some kind of odd object to use as a spoon, he replies, "Wait. I've got a better idea." He scouts out the room and the toys and actually finds something that looks more like a spoon.

He remembers the details of an activity better than the therapist does...twice.

He is cooperative, interested, imaginative, and enjoying himself in an unfamiliar place without his mommy, even after hours of testing.

I decided to keep Emily and Jacob in school through June so that I could have a little break to get things done around the house. Today is his last day at the school he has gone to since he was barely two years old. I'm pretty sure I will cry harder today when I pick him up than I did at his graduation. His teachers have instilled in him a love for Jesus that I didn't really think was possible in such a young child. He has learned so much and I am so grateful that First Baptist Jr. Academy was part of God's plan for his life.

So, I guess what I've learned today (and over the past 5 years) is that I can't be everywhere. I won't always be there to help Jacob through all of his obstacles in life. There will be times where he says, "Don't leave me" and I will have to leave because letting him fend for himself is the right thing to do. But God is there, and helping Jacob understand that he can call on his God for strength is what will give me peace when I have to let go. (Someone please remind me of this in August when I send him to Kindergarten.)

God is our refuge and strength, a very present help in trouble. Therefore we will not fear, though the earth should change and though the mountains slip into the heart of the sea; though its waters roar and foam, though the mountains quake at its swelling pride. Selah. The LORD of hosts is with us; the God of Jacob is our stronghold. Selah. Psalm 46:1-3,7

 "Fire Chief Jacob" on his final share day at school.
He had to come dressed as what he wants to be when he grows up.

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. 

Asking the hard questions

My son was a fat baby. There- I said it. He wasn't solid. He wasn't husky. He wasn't chunky.

He was FAT.
At 4 months old, he outgrew his infant carrier. I used to prop him up in the cart at Target or Publix with blankets and my purse until he could sit up on his own. At 9 months, he weighed 31 pounds. That is the weight of an average 3 year old boy. 

But I had my mommy-goggles on when I looked at my sweet baby boy. I wish I had a dollar for every time I said, "He's just solid." (It would have helped pay for all of the formula he was chugging.)

I can look back now and see his resemblance to the Michelin Man, but I didn't want to see it then. When people, especially strangers, called my baby fat, it bothered me. Not enough to make an issue out of it but it bothered me that when they looked at him, that was all they saw. 

What about his awesome hair? His sweet little laugh? He was the happiest, low maintenance baby in the world. According to “What to Expect the 1st year/The Toddler years”, Jacob was right on track developmentally.  The only “red flag” I had when he was a baby was the odd way he wouldn’t look you in the eye if you held him too closely. You had to hold him at a distance if you wanted him to look right at you. My sweet boy with the spiky blonde hair & chubby cheeks was just perfect.

And then he turned 2.

Jacob didn’t speak in full sentences until well after his peers. He stopped eating almost everything he once loved. He didn’t like to touch the sand or the water at the beach. Walking barefoot in grass was torture. He never wanted to play with the other kids. He went through stages where he would be completely obsessed with different objects and ignore the rest of his toys: sticks, strings, soap bottles. We had to force him to go down the slide at the playground. I could write a book on potty training, as I have now read every book, article, and blog on the subject during the 2 years it took to PT my son.

There were lots of excuses we had for the way our now 3 year-old behaved.
  • He’s a boy. Boys aren’t as verbal, as easy to potty train, etc…. as girls.
  • He doesn’t have any brothers or sisters to copy.
  •  He is the youngest in his class.
  • Maybe he is just shy.
  • He is just very cautious.
  • Every kid goes through stages.
  • He is just a late bloomer. Everyone develops at their own pace. 
  • And even with all of his little quirks, he was happy, silly, affectionate, etc... 

Some of them came from his teachers.  I remember talking to his teacher when he was 2.5, and pointing out that his speech was much less developed than his peers. His sentences were much shorter and even the quality of his speech sounded younger than others his age. She said, “Yes, and his gross motor skills are not as developed. But he is the smartest child in class- he knows all of his letters, shapes, and colors, and can count to 10. And he is the youngest!”

She was right. He was very smart. We waited until he was almost 2 until we let him watch TV and he quickly became a fan of Sesame Street. I’ll never forget driving behind a Fedex truck when he called out, “E! E!”, pointing to the truck. It occurred to me that E had been the letter of the day on Sesame Street. I wondered how many other letters he had learned, so when we got home, I drew the other letters from that week on his magna-doodle. He had 
learned a handful of other letters all by himself! My child was a genius!

Five days before Jacob turned 3, we had the biggest excuse yet for his increasingly challenging behaviors: Emily was born. This sent his potty training into total regression. After spending my entire 3rd trimester on my knees with M&M's and sticker charts, this was a crushing blow to my patience and post-partum psyche. He also became depressed. Being separated from me during my hospital stay totally traumatized him... and he really didn’t like his sister.

After an entire year of waiting to see if it was something more severe or just the result of being the youngest, shyest, most cautious BOY in his class, whose world had been upset by the arrival of a sibling, my husband asked his wonderful teacher the difficult question:
                                          “Do you think that Jacob has autism?”
                                      And that was the beginning of our journey.

                                                                  End of part 1.