Pre diagnosis days...

I think it will be useful to give some background on my gal, RJC.  Of course, she is now twenty years old which is a heck of a bunch of background, so I'll break it up over the course of a few blogs,  This is a very brief overview of life with RJC from birth to age 3 1/2.  There will be lots and lots and lots of missing info - for the sake of everyone's sanity I will only hit upon the highlights.

RJC was born in June, 1992 at 4 lbs. 12 oz.  She was a full term baby, and other than being on bed rest for the last two weeks with high blood pressure, my pregnancy was uneventful. As was done in those days, we stayed in the hospital for three days then took our gal home.  None of the professional expressed concerned about her weight and we did not know enough to be concerned, so off we went in parental bliss.

She was not an easy baby.  Not by a longshot.  RJC was a screamer from the start.  Even breastfreeding was not easy as she required absolute quiet.  At this time we were living in a condo complex, in a horseshoe.  One day some neighbors from across the double parking lot knocked on our door, handed us a baby swing and said, "Will this help?"  We had never met before this moment.  Apparently, she was keeping many of our neighbors awake.  My husband quickly spoke to another neighbor, a contractor, who finished our basement so I had a place to go at night when she was up and screaming.  We made an appointment with the pediatrician who sent us to a specialist who said it was colic and it'd all be over in three months.  He so lied.  I know because I circled the three month date on my calendar.

As RJC grew, it was apparent that she was very physically strong and extrememly coordinated.  We called her "Bam Bam" when she moved our couch with both of us sitting on it when we she was two years old.  She could shimmy up our doorposts and hover there (it was a bit scary when we couldn't find her the first time).  She climbed out of her crib with no problem at all.  And still...she was a screamer.  She did not use words; she would throw my hand in the general direction of what she wanted.  She did not point.  Tantrums were not just on a daily basis, but often on an hourly basis.  It was around this time that my mom discovered if she put on the purple dinosaur show, RJC was quiet...and content.  We were never so happy when they started selling "Barney" videos.

Just before RJC's second birthday, my husband and I went to the huge toy store to find a gift.  We went up and down every aisle.  Didn't miss a thing.  No gift.  We were just sort of standing there at a loss when I said, "You know, she really doesn't play with toys."  It set off a small alarm in my brain, but nothing major.  More like..."Hmmm.  That's strange."  I decided she needed more social interaction with children her age.  Just to be sure though, I brought her to the pediatrician again.  As I remember it, he reassured me, literally patted me on the head, and told me that I was a worried first time mommy. 

At age 2 1/2 I signed her up at a preschool for two days a week, three hours or so a day (I can't exactly remember).  I was very worried and gave the teachers a bit of a "heads up"  since the tantrum thing was now in full force.  After two weeks or so, the teacher gave me some information about Birth to Three and suggested I make an appointment.  She was a bit vague as to what they could do to help, but she was reassuring and seemed sure that this was the thing to do.  I sensed a hidden concern so I gave them a call.  In the meantime, RJC continued to attend the preschool and in truth, I appreciated the break during the week since I was now pregnant with her soon-to-be sister.  At this point, the purple dinosaur was my only hope for a quiet moment.  Those videos were on constantly.  Constantly.

I called Birth to Three and they sent over an OT to do an evaluation.  Very nice lady and she was great with my gal.  I was hopeful.  She suggested we have a Play Therapist and Speech Therapist come by.  Each would come once a week for one hour and they would help her develop her language.  In reality, only one of them showed up consistently...the other came a total of two times.  I look back at these days and can't help but to be amazed at how naive we were.  So the days went by.  She stayed in preschool, we had this nice lady come by and more importantly, we had the purple dinosaur.

RJC turned three years old and we were told that she was eligible to transition to school due to her lack of language.  We went to visit (long story) and I came home not at all happy with the program I had seen that they were suggesting for RJC.  I spoke to somebody from our school system and explained why that program was not going to be appropriate for her (none of the children in the class could talk and there was not enough movement - at this time I knew nothing about "typical peers" - it was just felt instinctually wrong)  and to the best of my memory he said something like, "Mrs. Cohen.  RJC is going to fail kindergarten.  This is all we have."  I was appalled and offended.  This was my child he was talking about.  I said something like, "But that's not the right program for her.  Don't I have choices?  And how can you tell me now that she will fail kindergarten.  She's three years old!  Do you also have the winning lottery numbers?"  Then he said something like, "Mrs. Cohen.  She needs our most intensive program.  This is what we have."  So then I said something like, "Fine.  You'll hear from my lawyer."  Then I hung up and looked at my mom who was also in the kitchen and said, "Can I even do that?"  My first experience advocating in the special needs world - and I didn't even know I was in that world yet!

My head was spinning with thoughts of what to do next, and panic that I just burned the only bridge I had, when the phone rang.  It was somebody else from the school.  Though I don't remember the conversation I do remember that the gist of our conversation was that the program was changing.  They were going to find at least three typical children for her classroom and this was the first time they were going to have a class like this.  Lots more reassuring and "we'll work with you" types of statements.  They promised she would be able to move around and that they were very excited to have her in their program.  I went with it.  I was desperate and completely lost for what to do.  RJC started school about three weeks later.

The school program turned out to be good for her.  The teachers seemed to know how to handle her behaviors, they kept her busy, she seemed happy to be there and bonus of bonuses...it was four days a week for an entire half of a day.  At the time, I had just given birth to RJC's younger sister so this time that she was in school was welcome for lots of reasons.  I picked her up every day so I had a minute to ask the teachers how she was doing.  Generally, I received the answer that she was fine, as expected she had some difficult moments, she was in the right place, etc.  I felt like she was safe when she was at school, I liked that she was with other children, and I did not mind the break from the purple dinosaur music.  Then came the day.  THE day that started our journey for real.

I had taken my six month old for her checkup and as I was leaving the office, I turned around to the pediatrician.  She was new to us, recommended by a nurse when I explained my concerns with RJC's language and behavior.  I asked the new pediatrician if there was something else I should be doing since RJC still wasn't talking.  Perhaps she should see a neurologist?  Without looking up she said, "Well, autistic children often don't speak."  Excuse me?  I told her that I thought she had the wrong child.  She put down her pen, gave me all of her attention and asked, "Didn't anyone ever tell you?"  She went on to explain that she read all of the reports (by then we had gone to audiologists - two different ones - because I was convinced she was hard of hearing) and we had the Birth to Three OT report and the Play Therapy report and the former pediatrician's report and the school report.  She had our interview notes.  This woman knew her stuff.  Yet I still thought she had the wrong child and asked her to double check.  She did.  The result stayed the same.

I left to pick up RJC at school.  I hadn't called my husband to share this news because I was still mulling it around in my brain and it's not really the type of thing you tell somebody over the phone if you can avoid it.  I was still pretty sure that there was a mixup but I went straight to the teacher and said, "So the pediatrician seems to think RJC is autistic.  Have you ever worked with an autistic child?  Do you know what that is?"  She had me follow her to another room and said, "Yes.  We have worked with autistic children and RJC is autistic."  I lost it.  Cried and cried and kept saying, "But nobody ever told me!"  She explained that as a school professional she could not give a diagnosis.  As a sidenote, I found out months later that when RJC was transitioning from Birth to Three to the school program, the Birth to Three person handed over the file and said, "She is so cute and she is so autistic."  Wow.  Our life was officially different and now there was serious research to do.  Besides the fact that I knew absolutely nothing about autism, I had to share this news with my family.  It was not a good time.  Not a good time at all.