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The Diagnosis

“When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. Michelangelo’s David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”

~Emily Perl Kingsley

 

Yes. We planned our trip to Italy and instead were sent to Holland and I didn’t see it coming for a second. Jace was born on a beautiful day in October of 2008. My pregnancy and delivery was totally normal. This little boy was 7 pounds and 6 ounces of pure handsomeness and sweetness. He was perfect. He was mine. I remember holding his little body in my arms and dreaming up a life for him. I imagined a life of baseball and football games, us having the ‘cool house’ where all of his friends would want to come hang out, and wondered if he’d be just as funny as his mom and dad.

It wasn’t long before Jace started missing his milestones. He didn’t sit up on time, crawl on time, walk on time, talk on time…heck… he didn’t even get teeth on time. I remember snuggling his little toddler self on the couch one day knowing something was “wrong”. My heart was in my gut. I came up with hundreds of excuses as to why he was normal. I was going to fix whatever was wrong and do whatever it took and no one was going to know about it. Autism crossed my mind, but I pushed it back down as hard and as fast as I could. This was not my life. The people in my circle added to my excuses. They told me dozens of stories of kids they knew that didn’t do any of these things on time and are totally normal:

“He’s just a chill kid”

“Every kid learns at their own pace''

“But he is such a sweetheart’”

“He doesn’t fit the whole list of symptoms”

It went on and on and on. In those moments I think I tried so hard to shut that door that I made myself sick. I hopped straight onto a roller coaster of highs and lows. I’d talk myself into believing that this child was typical one second… and fall into a deep hole of loneliness and fear the next. Our doctor agreed that we didn’t need a diagnosis but that he just needed Birth to 3, a program through our county that would send a speech therapist and occupational therapist out to our home to work with him and get him “caught up”. So that is what happened. Jace was 18 months old and our world was turning upside down. The day that Birth to 3 came out was a turning point in our life. Everything I knew before that day would soon change forever. I was transitioning into a special needs mom.

Jace started to receive Speech and OT therapies to work on his language development and his sensory and muscle tone problems almost right away. We began to learn a new language at that point. I spent every second I had working on whatever the therapists told me and researching my brains out as to what else could help. We still didn’t have a diagnosis and I was positive that was the best thing. This was my secret. I didn’t need my son to live with a sticker stuck to his forehead explaining some deficit that “he didn’t have any way.” In my gut, I knew something wasn’t right. He still wasn’t talking and everything was coming VERY slowly. My research was showing me that I could change his diet and there was a chance for him to talk….so I did. I pulled every penny I had and went shopping at the most expensive grocery store ever and bought all of the things necessary for a gluten free, casein free, sugar free, and dye free life. Jace’s diet changed on a Monday. At that point he was able to mimic one word phrases… “ball” for example. By Thursday of that same week, he could say “I love you mom.” This was it. This was going to cure my son. He stayed on that diet and his language started to come and we started to see progress. It was a victory… but it wasn’t perfect. Jace still struggled being around people…he was scared and couldn’t communicate his needs to me. His world was too stressful.

Jace started going to a daycare once a week to get “socialization.” People love to tell you that is what your child needs… just more socialization. So we tried it. Each day I picked him up from daycare, the teacher would give me a list of all of the things my child struggled with that day. He didn’t like this, couldn’t handle that, and they couldn’t understand anything he needed. I remember driving home from daycare one day and looking at him in my rear view mirror and seeing him differently. He wasn’t typical. I began to feel so sorry for myself. I sat in my selfishness for a while wondering “Why!?... Why can’t you be normal? Why can’t we just be like everyone else?” My desire to be normal trumped my desire to meet him where he was at and mother him the way he needed to be mothered. I was lonely. I was broken…

In May of 2011 our Paislie Kay was born. This time I delivered a child with a tight knot in her umbilical cord. Her Apgar score was good and she appeared to be a healthy baby despite what could have gone terribly wrong. She was a miracle. Doctors and nurses stopped by to see her cord and kept assuring me what a miracle she was. She was a miracle and she was my girl. A daughter. I dreamt of a daughter like every other mom in the universe and I got one. She was squishy and perfect and had lips to be jealous of. Paislie was more attentive than Jace was and she was a spitfire from the start. Like Jace, I dreamt a life for Paislie. I imagined years of dance class, pedicures, and girl talks. I even checked out her eyelids and brow bones to see if she could handle the perfect makeup application someday. We all know I like makeup. She would be my best friend. As Jace continued Speech and OT, Paislie hit every milestone on time. She was a busy body that babbled and ran around the house by her first birthday. We had a stubborn girl that did her own thing but was totally capable. She played with lizards and baseball bats and wanted nothing to do with girly toys. We thought she was just wild and fun and marched to her own drum just like me. I remember her 2nd birthday vividly. She received a vanity with a mirror and kept looking into it at herself saying ‘ooh baby’… the next few months are a blur. When Paislie was 1 ½ we had a miscarriage just shy of mid-way through our pregnancy. By her 2nd birthday, we were pregnant again with her little sister and I was swamped with work photographing weddings and families before I delivered in November. For about 6 months, we survived the day-to-day. I focused on Jace’s therapies, my pregnancy, and making sure that Paislie was safe and tended to… but as my mind was consumed with everything else, I didn’t spend significant time thinking about her language milestone. She was running and walking and that felt like a win… Jace didn’t do that at her age. She was fine. She was normal. But… she was also very difficult. We continued to blame her “stubborn” personality. She’d run and we’d chase her… she’d throw things and we’d pick them up. In my mind, this must be what it was like to have a “typical” toddler. Jace wasn’t typical and Paislie was nothing like him.

Our youngest at the time, Cedar, was born in November. I remember coming home and needing to separate Paislie from the baby after day 1. Paislie was 2 ½ by now and her talking had stopped. She would see that baby and assume it was a doll that needed to be tossed to the side away from “her” swing. She would attempt to go up to Cedar to pull her out of the swing. We immediately had to keep them separate. If Cedar was out and on the floor, Paislie needed to be napping or in her high chair eating. If Paislie was up and playing, Cedar needed to be kept in a bouncer up high or in another room with one of us. It was a struggle. I knew the first week of bringing Cedar home that Paislie had Autism. It wasn’t even a question. It hit me like a ton of bricks but somehow felt easier this time. I had already been mourning the idea that I didn’t have a normal life for years now. This time it felt real.

I called our OT and she recommended a company to do the diagnosis. The doctor came to our home and gave Paislie a Severe Autism diagnosis that day. It only took an hour. An hour. One hour and I had a daughter with Autism. Well, I had a child with Autism the entire time… but now the world would know. It was official. The sticker was on and I couldn’t rip it off. I had asked the doctor about Jace and he agreed that Jace didn’t fit the “classic” Autism diagnosis… and to wait it out and see how things went once Paislie started intensive services.

Therapy started immediately. I was thrown into a whirlwind world of paperwork, waiting lists, therapists, social workers, state workers, tests, and treatments. This new language became second nature in no time. It was real. I was a special needs mom. We were that family… the one I prayed I wouldn’t be.

It was only a couple of weeks later that a therapist we had walked upstairs and said to me… “Kacie, Jace will be fine. He will grow up and likely get a job. He will be ok. But let me diagnose him… Kacie, he could be amazing.

It was at that moment that I realized that if my child needed glasses or braces, I would have gotten them for him in a second… but my child needed therapy and I was doing everything in my power to stop that from starting. I couldn’t handle TWO kids with autism. But that was a lie. I could handle it. I had to handle it.


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