Sunday, June 24, 2012

The Sweet Sixteen

Sixteen years ago, I became a mother for the first time.   My baby daughter Amber was born on June 24, 1996 at Doctor's hospital in Miami on an extremely hot day in the Magic City.    I had gone into the hospital the night before because I started bleeding at 39 weeks.  My wonderful "country Cuban" doctor (as he liked to refer to himself) Dr. Inglesias decided that since I was so close to delivering and they couldn't figure out why I was bleeding that they had better induce me.   All of this seemed to be happening so fast - my sisters and mother had all delivered two weeks late for their first children and I figured that I still had a good three weeks before the baby came.  Damn, I had not even packed my bag.   But as any OB-GYN can tell you, babies have their own agenda and unless you schedule a C-Section well in advance they come when they want to come.  My baby daughter did so in the most dramatic way possible - blood everywhere (pre and post birth) - scaring me and giving her father his first gray hairs.    

The first few days after "baby-gedden" were interesting ones.   I was discharged less than 24 hours after giving birth with this little 7 pound six ounce stranger.   Amber had terrible colic and I had the misguided notion that drinking milk and eating tons of dairy would improve my breast-milk supply.   It was only after two weeks of crying binges that lasted hours (both Amber and me) that our pediatrician told me to cut back on dairy completely and get some Mylicon drops to help with her colic.  Finally, those crying episodes lasted only 20 to 30 minutes at a time (again, Amber and me) and peace seemed to reign in the house.   She would nurse peacefully and her dad would give her the football hold to help her belly.    That time was the "nesting period" when you, your husband and baby settle in and it's just you and them.    I remember those days of just sitting in the rocking chair and holding her as absolute nirvana.  Max would be in the kitchen making dinner while we rocked quietly listen to music or watching TV (only PBS of course- seriously - we didn't have cable then).   Sometimes he would take her in the kitchen in the Snuggely and make dinner while I rested.    She loved falling asleep on her father's chest.  Our world of three would only be interrupted by visits from Grandma and Grandpa who would shower her with affection and offer to babysit while Max and I went out to reconnect as a couple.   

Probably the hardest thing a working mother has to do is go back to work after having a baby.   You have this wonderful schedule set up and now you have to reinvent it so that it works as best as possible so that you can go back to your career life and leave the baby for those 40 plus hours you work in your job.   Luckily, Max was working at home at that time, so I knew I was leaving her in excellent hands - but I would feel a twinge of jealousy as I passed her back to him after our pre-work nursing session knowing that I had to pump at work and freeze the precious fluid in the freezer for her to have later the next day.   Monday's were the worst as I'd nurse her on demand the whole weekend and then return to work only to find myself need to pump three times a day and by the time I got on Metro-rail to go home, my bra cups were running over and the admiring looks from the lonely businessmen were just creepy.  

As time went on, we noticed that Amber was more sensitive than most infants to sounds.  You could not turn a page in a magazine in the same room with her without her waking up and crying - her ears were that sensitive to those types of sounds, but the TV being on was fine.   By the time she was one, she was not talking very much - really not at all - just a few words like "No,"  "Mama," "Daddy" and interestingly enough "e-mail."   We figured that she was just observing more than talking but she was also having a hard time making eye contact and when she was at the park as a toddler at 18 months - she would play on her own - seemingly oblivious to the other children.  When the other park mothers - who were eager to impress each other - would tell how many words or short sentences their children were forming - I would try to change to subject into the blocks that Amber would build.   I knew something was not quite right, but I didn't know what.   She was this beautiful blue eyed and blond haired two year old with rosy cheeks and yet she would barely say a word.  She would run around in circles at the park but had a hard time connecting to the other kids.   When she went for her 24 month check-up our pediatrician asked about her developmental milestones - she was meeting the running, walking and climbing but not the talking.   She would go to the corner and play with blocks and ignore everything else.   He suggested that we go to the Marcus Institute to have her tested.  Naively we asked if it was a place to help her with her speech.  The doctor replied that she needed to be tested for autism.    Max and I both looked at each other - unable to say much ourselves.   "But I thought that autism was a boy's condition," I replied numbly since I had two nephews with autism Spectrum Disorder.   "It's less prevalent in girls - only about 10% to 15% of the cases are girls, but they do get it especially if it runs in families," the doctor explained.   So we took our sweet little daughter to be tested and hoped that maybe they were wrong that she was just not talking and needed speech therapy.   But the diagnosis was that she did have autism but that she was on the mild end of the spectrum.    She would need special therapy and classes which luckily Gwinnett County schools provided once they got that diagnosis.  

And so the world of IEP's (Individual Educational Plans) began.   We would meet with a team of teachers who specialized in learning and behavioral disorders and we would set goals for Amber to achieve.   Mostly it was for verbal skills and socialization - they caught on that she was a smart kid but that she had a hard time expressing things and could be extremely sensitive.   I mean really, really sensitive - empathic which is not something most kids with autism have the ability to be.   She could not take the dull din of a cafeteria or a food court with a low roar, the sound made her very uncomfortable.   I remember being in line at Target getting ready to check out when Amber started to cover her ears.  I looked around trying to find out what the source her discomfort was - I could not hear anything out of the norm.   Then the sound of a child starting to have a meltdown started to drift through the store, but Amber had heard it about 30 seconds before anyone else in the front of the store did.   Her teachers reported the same thing - that she would cover her ears and start to cry and then about a minute later they would hear the cries of a child maybe two classrooms down having a tantrum.   When she got more verbal at three years old, she developed a condition called echolalia in which she would repeat things over and over that she heard - lines from her favorite shows like Arthur, Teletubbies, or Sesame Street.   Sometimes it worked to her advantage like when other kids heard the dialogue they would come over and start talking about the shows.  Other times you couldn't get her to talk about anything else and the kids would get irritated and leave.   I always appreciated those children who stuck around because they didn't know anyone at the park and just wanted to play.  

I remember a group of moms setting up play-dates with the kids in Amber's Special Education Pre-K class.    The kids would have an activity that one parent would supervise and the rest would sit and talk.  I remember one mother just looking distraught and saying that she read everything she could about autism and crying herself to sleep every night.   That comment struck a nerve and I replied "Then stop reading those books - your son is your son - he's not a condition and whatever his journey is with this is for you and him to discover.''   My comment got another mother to interject "But if you don't know the latest research - how can we help our kids?"   "Precisely my point," I countered "you are the expert on your child - the research is great but you need to know what will and won't work and for crying out loud - don't read things that are going to make you sob in the middle of the night.  That's definitely not helping you or him."    I didn't get invited back after that - but what did I know?  There is so little written on girls with autism that for Amber, I literally had to make it up as I went along.  Where other mothers wanted to keep their kids home because it was easy to contain them, my feeling was "Hell, no - I'm not going to be a prisoner with my child.   She's going to have to know how to deal with the real world - stares and all."   So we continued to go to the park and sometimes Amber played by herself and sometimes other  kids would play with her and either way she wasn't really bothered by it.   We went to movies, we went out to dinner, we went to the shopping malls  - we did normal stuff.  I'd learn to know when she was getting too over stimulated and get her into the car just as the magic was wearing off and she was turning into a screaming pumpkin.  

As she progressed in school, her communication got better and her teachers genuinely loved having her in class.    With autism classes in Gwinnett County, you stay with the same teachers for years so they could see your progress.   She handled the birth of her brother really well when she was four years old - just a few meltdowns that first month and we were home free- about what you would expect from a child even without autism.   I have always thought that allowing Amber to have her IEP was a good thing for all kids in general because all kids learn differently.  I felt for the ones who were grouped into classes and had to followed a standard curriculum that they were not being given the opportunity to figure out how they learned best - but Amber got that advantage.    Before she went into middle school, I had one of her teachers take me aside and tell me that she's going to be fine.   She'll be able to live on her own and balance a check book.   She was already talking about being a background animator for Pixar when she grew up - and that was in the fourth grade.     She still wants to be a cartoon animator and she has the focus to do it.   She loves her high school and I pray she gets to finish her career there (sometimes autism programs get cut at one school and combined at another- that happened her last year at middle school but she did surprisingly well with the change).  

I guess as I look back on my first sixteen years as a parent - I've had moments of doubt as to whether I'm really any good at it.   I've had to deal with the guilt that maybe if I had read more research - she'd be further along.   Then I hear my daughter and her brother laugh together and rarely fight (at the most they get a bit annoyed at each other) and I think how lucky I am.  They are truly close and love each other very much.   I've never had my teenage daughter throw a hissy fit and storm out of the room saying that she hates me and wishes she was never born into this family (unlike some of the teen fits that happened in my family during the teen years in the 1970's).   She's sweet, funny, creative and has her own site on Fan Fiction where she posts stories and has followers from all over the country.  I'm actually very grateful to God for giving me the opportunity to love and cherish someone like Amber.  It completed changes how you see the world and how you judge people.    I know now that nothing is ever easy and even parents with "normal" teens have their challenges.   For me, I try to enjoy the moment now and not worry about if she'll marry, or get a decent job or have kids.   I know those things are coming but why worry about something you have very little control over?   

Sixteen years ago, I held my baby daughter for the first time and my life has never been the same.   I'm a much better person for knowing and loving Amber.  I hope one day she'll know the same joy I've felt as a mother.   But for now baby girl, be enjoy your sweet sixteen and blow out the candles - because in a very wonderful way - you very definitely take the cake.  

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