A Delayed Response

Disgusted with the medical community and it's lack of answers, but desperate for a reason why my daughter was so far behind, I went back to the pediatricians one more time and asked for a referral to the Early Intervention program for a developmental screening. The next week we drove to, you guessed it, All Childrens and made our way to the third floor. I really don't remember much about the intake process. I know there was a lot of paperwork and writing down things I had already written a hundred times before. Cams birthweight, how my pregnancy was, what my concerns were,etc. A sweet older woman called us back into a small room filled with toys. She looked at Camryn, visibly old enough to be walking yet crawling around on the carpet and she looked at me, who I'm sure looked tired and sad. "My daughter has Down Syndrome"she said, which I know was meant to comfort me and let me know she understood, but at that stage of the game, I was beyond comfort and although I thought it kind of her to try to make me feel at ease, I really didn't care about her or her daughter. It sounds horrible, but it's just where I was at that time.
A few minutes passed before three women came in, all young and pretty, holding clipboards and pens. They introduced themselves but I couldn't tell you who they were, just that they would be administering the tests to Camryn and doing her developmental eval. They asked me the same questions the rest of  All Childrens had and then began the testing. "Camryn"they called to her."Hi Camryn. Camryyyyyn!" They were trying to see if she responded to her name, but of course she didn't. Then they got in front of her on the floor and put some wooden blocks out for her to play with. One of the women started stacking the blocks about three high and then asked Camryn if she could do it. Ha! Ladies, are you serious? Did you not just hear everything I told you? I knew they had to go through the testing even if it was completely obvious that Camryn couldn't do anyo of it for documentation, but to me it was yet another reminder that my daughter was so very far from where she should be. For the next hour and a half, there would be puzzles not put together, crayons put in Cams mouth instead of on the paper and countless failed attempts at getting Camryn to communicate or interact. Then, all three women stood up with their clipboards and walked out of the room. They were going to total Cams score and would return shortly with the results. I remember sitting there in that hard plastic chair, watching my little girl with her tilted head sitting on the floor, mouthing a bristle block and I wondered if there would ever come a day she would take that block out of her mouth and build a castle with it instead. I didn't think so.
Twenty minutes later, two of the women came back in with a paper printout about a mile long. They sat down across from me and began going over this number and that percentile. I was hearing them, but none of it caught my ear until we got to the last page bottom paragraph that read "At age fifteen months, Camryn has a severe developmental delay in all areas and is functioning on a five month level." I said nothing, just nodded and signed off on it. Inside my head the words "five months" were bouncing off one side of my brain to the other, but outside I was in a state of shock and just kept nodding and mmmm-hmmmming as they talked about the next steps. Camryn would be eligible for services provided by Early Intervention. She would need Occupational, Physical and Speech therapy. We would be signed up for the home teacher program, and someone would be sent out twice a week to work with Camryn for thirty minutes, reading books and singing songs. And at that point the Charlie Brown teacher voice kicked in and I heard nothin but "Mwa wah wa wah, mwa wah wa wah". My head was pounding out "five months,five months,five months" to the beat of my pulse. I picked up Cam, thanked the women for their help and got in the elevator,a sinking feeling in my stomach.
When the home teacher showed up for her first visit with Cams, guess what? She was a young twenty-something girl, with fresh polished toes and tan lines from her bathing suit straps.Basically me five years ago. She would tell me where Camryn should be at this stage (which I already knew) and what things I should work on with her (which I also already knew) and then she would sing "Twinkle,Twinkle" while I sat there thinking "Is this for real? I mean, it's great that you are singing to my kid, but how is this going to make her normal?" These visits went on for the next three months, until Camryn was eighteen months old and was able to attend a center for special needs children. We were referred there by Early Intervention, but the center was run by P.A.R.C., which for those of you not familiar with that stands for Pinellas Association for Retarded Citizens. Retarded? OMG, I had known about PARC my entire life and never gave it much thought because it had nothing to do with me and my idyllic childhood. But I do remember when I was a kid the word "retarded" was "not nice" as my mother would say and only used by the mean kids at school when they were picking on others. There was the stereotypical image of a "retarded" person with a wicked overbite,drool all over their chin, making loud sounds and waving their arms around. When I was nine, that's what retarded looked like. But now I was twenty-seven, looking in my rear view mirror at a baby with beautiful blue eyes and perfect lips, and I was driving her to a school for retarded citizens? I had known for many,many years that "retarded" was just another word for "slow". But over the years it had taken on such a negative connotation that hearing it always made me cringe and I would never dare use it. I cried so hard that morning that it was hard to see the road at times, but I couldn't control myself. It was one of those cries where you can't catch your breath and you're nose turns bright red. Camryn sat oblivious in her carseat. I got myself together as I pulled in the parking lot and lifted Cams out of the car. I held her close. I could smell her strawberry scented hair. I made sure to bathe her and dress her in something adorable, because I knew from working with kids,the better they smell and the cuter they look, the more likely they will be snuggled. I know it sounds bad, but it's true. We walked in and immediately I felt like I was back at my old job. There were kids in wheelchairs, kids with walkers, kids with tubes and ports and there was Camryn. I coudn't breathe, but I kept going, making my way to her classroom. Her teachers greeted us with big smiles and showed us around the room. They were talking to Cam and showing her toys, but of course she wasn't responding. She clung to me like a baby monkey to it's mother and when the time came for me to leave, we both teared up. The first day I took Mason to pre-school she had just turned two. We had talked about her going for weeks before and she knew that I would leave, but she would have a great time until I came back later that day to pick her up. She was excited and she felt secure becuase she knew I would be back. I literally walked her in, kissed her good bye and walked out. That was it. She didn't cry, she wasn't scared. It was flawless. With Camryn, there would be no explaining or talk of good times and no worries. I had never left her anywhere and she had no way of knowing where she was or if I would come back for her. Leaving her screaming at that gate was the hardest thing I had ever done. I held it together until I got in my car. I called Anna and as soon as I heard her voice, I lost it. I knew she would understand, that I wouldn't have to explain. And she did. Although everything up to this point had been stressful and scary and worrisome, it somehow seemed like a dream. But when I dropped Camryn off that day, it made it real, the PARC sign said so. And still, nobody could tell me why.