...and then they told us our son is autistic.

5 years ago

After six months of waiting, the day arrived for our son PJ's evaluation with the Early Childhood Development Team at Children's Hospital of Philadelphia.

The appointment was for 9am, which meant we had to get up, fed, dressed and over the bridge into Philly during the morning rush hour. When he had his evaluation for Early Intervention, I cleaned like a psychopath. In the same manner in which I prepared for his Early Intervention eval, I cleaned. But in this case, it was us, not the apartment! I dressed PJ with my usual care (PJ has a great wardrobe!) and dressed myself as well as I could (I do not have a great wardrobe, but the fruits of some Christmas gifts served me well). I made sure my hair was straightened and my makeup was nice. Pete, us usual, looked nice in that effortless way that men have. Casual but not stuffy or anything. If first impressions were going to mean anything, I was making sure ours was a good one!

I somehow managed to go off on a fashion tangent there. Sorry for that Stacey and Clinton moment.

The office wasn't located at the main hospital but rather in a satellite office on the campus of Drexel University. The air had a collegiate feel to it, but the waiting area had the familiar feel of CHOP. We checked in and after a few minutes, we were called back.

We were greeted by a nurse who took PJ's vitals and then led us to an exam room. The exam was conducted by a wonderful nurse practitioner named Monica. As she interacted with PJ Dr. L, the developmental pediatrician, would observe PJ through a two-way mirror in an adjacent room. I shook each of their hands while I shook inside- my nerves were right at the surface. In my heart, I knew that it was likely that PJ was autistic, but I wanted the exam to go well just the same. I wanted Monica and Dr. L to get a glimpse of the funny, handsome, bright Boy I knew despite what might be "wrong".

Pete and I were asked to sit and PJ and Monica played. The room, though small, boasted a child-sized table and was dotted with toys and games. PJ jumped right in, examining the toys, putting together puzzles, and joined Monica in some drumming. A jar of goldfish crackers, lid on, were left out in PJ's line of vision in the hope that he would somehow request that the jar be opened. He eventually did so by bringing the jar to me and placing it in my hands.

At one point, Monica picked up a doll and held it out to PJ, who promptly selected a bottle from the jumble of toys and brought it to the dolls mouth, sending Pete and I into laughter and prompting a questioning look from Monica.

"PJ was breastfed for twenty months! I think he's had about four bottles in his lifetime- he went from the breast straight to a sippy cup! Where did he learn that?" I laughed. We chatted for a few minutes about breastfeeding before she turned her full attention back to PJ.

Pete leaned in and whispered, "At least he didn't try to nurse the doll!"

"At least he's pretending something, " I whispered back. "He can pretend he has boobs if he wants!"

Monica continued to play with PJ, take notes, and ask Pete and I questions in a seamless fashion. It did not take very long for Pete and I to feel comfortable and relaxed. PJ took to Monica beautifully and the exam was going well. I wondered what the doctor was thinking behind the mirror and felt a bit like Dorothy before she knew that Oz was just some dude.

Pete and I were surprised to learn that there was a physical exam, too. PJ's ears were checked, his stomach palpitated, his heart and lungs were given a listen. His skin was examined under a black light called a Wood's lamp to check for a  condition called tuberous sclerosis. His boy bits were looked at to make note of his hypospadias repair. Much to PJ's chagrin, his ears were studied- that brought on a mini tantrum that was quickly abated by the offer of  his paci!

Once we had PJ dressed we all settled back into our chairs. Dr. L and Monica let us know that we would need to return in two weeks to discuss the results. We had been warned about this possibility when we made the appointment- often, results could be given right away but other times, the details of the exam had to be looked at more thoroughly to determine if there would be a diagnosis. Pete and I had been hoping for a faster resolution, but were okay with returning. We tried not to speculate as to what that could mean as we headed home.

Later that day, I tucked PJ into bed for a nap, read him a story and kissed his head. I whispered thanks to him for being so brave as he wrapped his arms around me for a hug. It was one of those moments where nothing mattered but my best Boy.

Layer that night, I tossed in bed, unable to sleep. It was one of those moments when nothing mattered but my best Boy.

Two weeks after after the evaluation, Pete and I went back alone to discuss the results with the team at CHOP.

I was feeling the same jumble of nervous energy that I felt before- I got dressed in cute clothes and put on makeup, fussing over my appearance as if that might change the results. And in my heart, I knew what the results were.

Pete and I chatted as we drove over the bridge into Philly. Many times, if there is something we are both anxious about we end up picking fights with each other out of stress, but this time we companionably talked as we parked and walked into the building, stopping quickly to grab drinks (Diet Coke for me, Vitamin water for Pete) from the WaWa in the same building. I had not been able to really eat for days due to a combination of horrific stomach bug and my growing nervousness about our appointment, but in that moment my whole being was crying out for a Diet Coke!

A few minutes later, we were in the same room that PJ's exam had been in except that this time, both Monica (the nurse practitioner) and Dr. L (the pediatrician) were on our side of the rooms two-way mirror. After some small talk about how they remember each of the many patients they see (PJ was "the blonde boy with the father who is an RN"!) we got to it.

I will never forget how Dr. L started off the conversation because it truly made me laugh out loud, even though she meant it in all sincerity.

"You son, " she said, "is a little...different". Her face changed and she spluttered "I mean, not in a bad way, of course..." but I was already cracking up. Yes, that Boy of mine? He is different!

Dr. L went on to explain that it wasn't a personality assessment, true as it might be. In most cases, they are able to determine diagnosis right after the exam- most children seem to lean profoundly towards meeting the criteria in a definitive way or not. PJ was a tougher case, and the tapes of his exam had been played for the entire team and there was much discussion about what was to be determined. There had been some debate, but in the end, the team agreed that the diagnosis of autism was the correct one for PJ.

Pete and I glanced at each other-  we weren't surprised at all so it was not difficult to face the news in that moment. I said, "Okay. So what's next?" with a composure that surprised me.

Monica and Dr. L planned out the next few months- continuation of PJ's current therapies, the addition of speech and behavioral therapy, and an appointment with an audiologist to rule out hearing issues. I asked about how this diagnosis should/would determine our decision to have another child, and Monica said "You know, Dr. Z in our Genetics department is wonderful, and she will have better answers and guidance for you. " I was happy to hear this- we had an appointment to see her in June and although we already had some glowing reviews, it was comforting to hear them from another professional.

As we spoke, I was so thankful for the fact that this conversation was being held with such a positive tone. The diagnosis was not easy to hear, but Dr. L and Monica were able to convey to us that there was no reason to see anything but a bright, safe, future, full of all of our Boy's potential. I found myself smiling, laughing, feeling so comfortable with the plans being laid out for our son. They didn't just see autism- they saw every bit of our funny, sweet Boy and we were so grateful for that.

Pete and I were plied with the obligatory piles of autism paperwork- a large directory of service providers for the recommended therapies, fliers about lectures and support groups, pamphlets about autism research currently being done at CHOP (another top reason we went with them), etc. Monica remembered something else she wanted to give us and stepped out of the room to get it, leaving Pete and I alone in the little room (Dr. L had said her goodbyes a few minutes before to see her next patient).

Pete turned to me and said those three little words- not "Are you hungry?" or "Got any gum?" or even "I love you." He said the three little words guaranteed to make me crumple:

"Are you okay?"


My eyes, predictably, filled with tears just in time for Monica to walk back in the room. Crap. There went my carefully constructed facade of having my shit together. Monica took one look at my teary face and knelt down next to me, taking one of my hands in hers, and earnestly assured me that although it is hard to learn that anything is "wrong" with your child, we were going to be okay. PJ showed so much potential and we were doing all of the right things by him. Her kindness was touching and much needed.

After a few more minutes of discussion, we said our goodbyes and Pete and I trudged through rush hour traffic to get back into New Jersey and back to our Boy. I just wanted to see his face.

We got in and I went straight for my baby, who was smiling now that his Mommy and Daddy were home! I held my arms out for a hug and PJ obliged, wrapping his small arms around my neck. It felt no different from a thousand hugs before, even though we had a conformation of this life-changing thing in our lives. His eyes were as bright as ever and his little body as alive. How stupid that I worried it would look different once we "knew".

Later that night, after PJ was in bed, I sat on the floor of our living room with my "autism binder" open and the paperwork we had received spread out before me. Putting paper into binders and making everything neat and organized is one of favorite activities in the whole world (ahemweirdo). When I was in school, going shopping for supplies was like panacea for my soul. But that night, as I shuffled through all of the information, the words started to swim before me. I leaned over until my forehead touched the carpet.

"Baby?", Pete asked, a note of concern in his voice. He got up and sat next to me, gently taking my face in his hands and lifting my head off the floor.

"Our baby..." I said, but couldn't say any more. Instead, I started to sob. After standing at the edge with a brave face on, I had finally gone ahead and jumped. I cried on my husbands shoulder and realized that we needed to say goodbye to the life was had though our son- our dreamed of, wished for son, who healed our hearts with the news of his impending arrival-  would have. I only knew what would be for the next few months as we navigated doctors visits and therapies and blood drawn and more of the waiting game because it felt like the life I had already mapped out had been torn to shreds. I knew we had all of these plans, but what the hell was going to happen to us?

After a few minutes I got myself together and Pete and I lapsed into quiet, sitting together while I returned to organizing papers and Pete returned to watching TV. I could tell that he was thinking about everything as much as I was. But really, how much could I allow myself to cry over things? I knew there would be hard days, and sometimes there would have to be an out-and-out fight to make sure that our Boy had every tool at his disposal to meet the potential we know he has.

Still, I think life is always like that, particularly the life of a parent. Do we ever stop fighting for our children, the "normal" ones and "not normal" ones. So far, it had been...okay. More than okay, in fact. Raising our Boy has been the greatest challenge and the biggest blessing and the best job we have ever know. Were the odds in our favor that the rest of our lives would be...just as great?

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