In the beginning

There I was, age 34, and pregnant with my third child.  I secretly, desperately hoped for a girl.  I had two boys already, and this was my last chance for a mini-me.  Not that I wouldn’t have been happy with a boy.  I truly would have loved and enjoyed him as much as my other boys.  However, I had visions of all things pink, Barbie dolls, baby dolls, dollhouses, smocked dresses, and shiny black Mary Janes.  I also had my share of worries.  I was 34, after all, and I had been so lucky to have given birth to two healthy babies, and I guess I thought I was tempting fate by having another.  I work in special education, so I knew the risks.  Not only were there genetic disorders, but the scary Autism Spectrum Disorder that had become so prevalent in recent years.  I had worked with some children with autism by that time, but not many, and not on a daily basis.  I was still under the assumption that 1 out of 100 kids born with autism was a pretty low chance, and I knew that boys were more likely to have it than girls, which gave me yet another reason to hope for a girl. (oh, the irony!)

It’s a Girl!!!!!  My 20 week ultrasound arrived and we found out I was indeed getting my wish!  There she was, all my dreams wrapped up in one tiny package!  She would complete my life.  I had my wonderful husband, my awesome sons, and now a daughter.  I would no longer be outnumbered 3 to 1.  I would get to go see princess movies as well as super hero movies. Watch ballet as well as baseball.  It was a happy day. 

The rest of my pregnancy was slow.  I had gestational diabetes, so I checked my sugar all the time, and took walks to help keep my sugar levels within normal limits.  The fact that I was having a girl was so awesome that I thought it was too good to be true.  Could I really be getting everything I ever wanted?  She was the icing on the cake of my already blessed life. 

Clara was born in early September, and she was perfect.  She had huge blue eyes and fine brown hair.  She had her mommy’s nose and her daddy’s mouth, and chubby cheeks just like her brothers.  She slept all night at two weeks old, smiled before six weeks, never had any sickness, and was pretty much the perfect child.  She was the joy of everyone’s lives.  Her brothers were 12 and 8, so they were old enough not to be jealous, but were completely enchanted by her. 

She met her milestones, maybe a little later than other babies, but I was not worried about that.  My second son didn’t walk until he was 15 months old, and he can outrun just about anyone now.  I just figured everything would happen all in good time, but as time went on, she never started talking.  She babbled, cooed, and laughed, but she didn’t speak with meaning.  She sort of said mama and dada, but not with real meaning. Her first birthday came and went, and she still didn’t talk.  I also noticed she did not like anyone except me , my husband, or her grandmother, who takes care of her when I’m working.   And really, if I was there, she had no interest in ANYONE else.  Occasionally, her brothers could make her laugh.  If my husband had her by himself, she interacted with him, but other than that, she did not have social interest in other people.  She also did not point or use gestures to communicate.  By this time, I knew something was wrong .  In my head, I wanted to rationalize that she could just be a late talker.  Some members of my family were late talkers, so yeah, that could be it.  When I expressed my concerns to my husband and his mom, they did not seem worried.  So, I waited.   And waited.  And waited for her to start communicating.  I told myself I would wait until her 18 month check-up to see if she would develop any kind of language.  I scoured the Internet and found only vague descriptions of early signs of autism.  I read everything I could find, searching for something that exactly described my daughter.  I learned a lot, but also became confused.  She did not meet every single criterion, but she did meet some.  Some of what they described could be considered normal development in the absence of other behaviors.   I found myself wishing for some kind of interactive diagnostic website where I could click which behaviors she displayed, then it would be calculated and give me an answer.   Did she have Autism Spectrum Disorder?   Or maybe it was something less scary like a simple language delay?   I had all kinds of uncertainty.   She did not go to daycare, so was that why she was not social?  She is the baby of all the family by several years, so maybe we baby her, and she doesn’t speak because she doesn’t have to?  Underneath all my knowledge and uncertainty was hope.  Hope that I was wrong.  Hope that she was just delayed.  Hope that she would one day wake up and ask for breakfast.   As the day of her 18 month check-up approached, I knew already what we were facing.  I knew she was showing signs of autism, and I was devastated.

 I was so sick of being in limbo by this time.  It had already been six months since my concerns began.  Also, I knew from all my research that early intervention was of utmost importance when it comes to autism, so when she failed her MCHAT, which I knew she would, I was ready to get the ball rolling.  The afternoon following her check-up, I began making phone calls to try to schedule an evaluation so we could begin therapy if that is what she needed.  I was absolutely floored when I found out that there was a 4 to 6 month waiting list for evaluations anywhere in our state.   Given the extreme importance put on early intervention, I was shocked that my child was going to be almost 2 years old before we could even have her evaluated.  Why tell parents that the earlier you catch it the better, if no one will be able to catch it earlier because of this extremely long waiting list?  So now I was helpless.  Here was my child, who desperately needed speech and language therapy if nothing else, and my hands were tied.  Meanwhile, family members were still under the delusion that she was just a late talker and minimalized my concerns.  I wanted to forget it all, to believe the family, to chill out and wait for her to speak.  It sure seemed easier.  I began receiving the paperwork for her evaluation that I had requested from two different places in order to see who could get her in first.  I sat on the paperwork for weeks.  What was the big hurry when she wouldn’t even be able to get in until kingdom come?  I had wanted her evaluated within weeks, not months.  Now what was the point?  So, I waited, and I stewed.  I fretted, and experienced strange periods of calm.  I cried, but did not allow others to show pity or tears. 

This was only the beginning.