Finding Amber 2

It was Amber's 20th birthday - the birthday that straddles the winding river between teenage-dom and adulthood. My sweet daughter - true to nature wanted to go to Skate Country and spend the day with her sister skating and having icees and pizza.  We figured that on a summer afternoon on Friday the place would be open and didn't bother to see if was before we left the house. 

We drove up to a completely empty parking lot and learned that the skating rink was only open at night.  Quickly recalculating, I said - "Hey do you want to see Finding Dory?  I know I have Group-Ons for it."  Both girls gave a resounding "YES!" and we were on our way.  

I have blogged before about what the movie Finding Nemo had meant to me.  I had seen it with Amber in 2003 when she was seven and had been diagnosed on autism spectrum for four years at that point. Here is the link for the original blog.  Click here to read Finding Amber .  We had seen the movie again in 2012 and it touched me as a parent of a child with developmental disability and how far our journey had come: from Amber's first diagnosis as a toddler,  fearing that she would not be able to take care of herself, over compensating by doing everything for her and worrying about how people would treat her.  So here we were in a dark theater getting ready to see Dory's journey as a fish with short term memory loss and her flight into adulthood.  One of the really cool things was the audience was not so much composed of little kids but of teens who loved Finding Nemo and wanted to relive the magic of that first movie. 

As the young sweet little Dory works up the confidence to ask questions of her parents or other people - she must always preface it by "Hi. I'm Dory. I suffer from short-term remembery loss."   She also worries that she's constantly letting her parents down.  Of course, I got the feels immediately.  The sight of this sweet little thing trying to find her way in the world hit home and having to apologize for her disability was heartbreaking.   Her parents try to keep her safe but a rogue current carries her away and she is lost.  Unlike Nemo, young Dory can't remember exactly where she lives and as years go by, she starts to forget who her parents are.  It's a worst case scenario for any parent but for a mother of a child with a developmental disability it exposes your worst fear.   You then see Dory over the years - growing  up, constantly asking for help, explaining her disability and swimming further away from home.  Eventually, she meets Marlin and helps him find Nemo. 

It didn't dawn on my then, but in Finding Nemo, you had two characters with disabilities who had to take control and eventually help save the day when most people would have written them off. I was so focused on Nemo and his handicap that Dory seemed more of a comic foil than a character who was also struggling with her own challenges.  But her way of handling life actually made sense - she had confidence in herself because she didn't have any other choice.   When Marlin talks about wanting to protect Nemo from everything her response is a wake-up call to any overprotective parent:

Marlin: I promised I'd never let anything happen to him.
Dory: Hmm. That's a funny thing to promise.
Marlin: What?
Dory: Well, you can't never let anything happen to him. Then nothing would ever happen to him. Not much fun for little Harpo.

When I first saw this - Amber was a child and the idea of her

being out in the world was theoretical - it would be years before she would be on her own and it was just something I didn't want to deal with at that point.  I just wanted to keep her out of harm's way, keep her from getting her feelings hurt from kids who might make fun of her, keep her from trying something new that she might fail at and feel embarrassed.  But the reality was that I wasn't so much protecting her - I was protecting me.   The idea that the world would not embrace your child because they are out of the norm is scary so you overcompensate.   You answer for them, you do as much for them as possible to soften the blow of anyone hurting them.  

There are so many plans that you make from the time your child is born - the birthday parties, the dances at school, the first boyfriend, the prom date, the wedding day.  Then you are told that they are on the autism spectrum and will go on the special education track.  The idea of how they will be as an adult one day is sidelined so you can get them from pre-school, to kindergarten, to grade school, hoping they can make it through the challenge of middle school and then high school.  At graduation, they will get a special education diploma which means that after 12 years of school they still need to take a GED to get into a community college or get a job.  You see the posts from parents who spend the spring of their child's senior year on social media wondering if their child got into the college of their choice.  You are just hoping that your child will be able to find a job, find an apartment and make ends meet.  You worry that you need to plan financially to still support them in adulthood and provide for them in your will to help them when you're gone and pray that her sibling will keep an eye on her finances.  It's pretty heady stuff to deal with when your kid is just getting out of their teens.  

As time goes on - you realize that your plan was just that - an idea but that nothing is set in stone.  You have a chance to create something out of the norm and because there are so few books about girls with autism.  You realize that you are going to have to make it up as you go along.  A plan is not really something you can ever really count on and you have to take things day to day.  Dory exemplifies that and says rather forcefully at one point, "I've never had a plan in my life!" 

For us control freaks that line seems like heresy. How can you never have a plan - how can you go through life without knowing how to get from point A to point Z - there always has to be a plan for God's sake!   But as Dory explains further,  “The best things happen by chance."   So I reflected on that quote and having a daughter who has what the world perceives as a disability - autism.  She is in my life to teach me that the most wonderful things happen when God laughs at your plan, throws it aside and gives you something incredible that you might not be able to comprehend at the time.  

Amber cannot be simply defined as someone with a disorder, a disability, or a disease - she is my daughter and one of the sweetest, kindest people I've ever met.  While some signs of autism, particularly Aspergers, can seem like the person you love is not connected and can be obsessive/compulsive - we've been lucky that Amber's symptoms are pretty mild and how they manifest are different in girls than boys.   She gets jokes, has a sense of humor and loves animals.  She still has a hard time making eye contact but her social skills have come a long way since she was younger.   She's rarely given me any type of female teenage drama that most parents must endure.  I can count on one hand the number of times that she's ever rolled her eyes and said "Whatever!" 

In a recent interview, the director of Finding Dory Andrew

Staten explains how he sees Dory and how he wanted to bring in her back story and relationship with her mother and father.  "Her parents don't try to change her. They just want to help her own who she is. Being a parent and seeing my kids grow up and enter the world, I realize that all kids are born with certain temperaments, flaws, quirks — and it will probably be who they are. You probably spend most of the time worrying about those things as a parent, too — you don't lose sleep over the things they do well. The best quality I could give Dory's parents is that they never doubt her." 

At the end of the day, I think most parents worry if their kids can make it on their own.  If we've done our jobs hopefully they will be creative, independent and loving people you've always prayed they would be.  Dory, even in light of her short term memory, is strong, smart, loyal and can even speak whale.   To quote Dory, "You have to let go and see what happens," because despite your best efforts - you won't be around forever no matter how hard you try.   And when that day comes - hopefully you'll have a good laugh with God about your plan. 

Finding Amber

When I first saw the ads for Finding Nemo nine years ago, I thought to myself that Pixar had made a giant misstep.  After all, the monsters in Monster's Inc. were cute and had wonderful personalities, but a movie about fish without a mermaid - really?!  I was not sure that I could get close to Nemo no matter how cute his animated face looked.  But I took seven year old Amber and three year old Daniel to see a movie about fish because everyone else told me how good the movie was.   As we settled in and heard the voice of Albert Brooks as Marlin, I still had my doubts.   Then, after a playful scene with Marlin's wife Coral, you see his life changed forever after a barracuda presumably kills her and the hundreds of eggs she's laid except for one that has a small crack in it. That egg eventually becomes Nemo - a special needs fish with a "lucky" fin that is smaller than the other.  He is disabled so it takes him longer to swim then the other fish.   Because he had lost almost everything in the attack, Marlin becomes a recluse with Nemo, living in an anemone (a plant that stings) to keep bad things from happening.   He tells his son that the ocean is a dangerous place and refuses to let him out of his sight.   Nemo ends up resenting his father and rebelling which leads to them being separated - the quest to be reunited is the thrust of the movie. 

As I watched the story unfold in 2003,  I wondered if I as the mother of a daughter who has autism if I was like Marlin.   Although I had never experienced that sort of loss, I too thought the world was a dangerous place for my baby girl.   I was very protective because Amber's way of processing information was different than most kids.   Amber is on the mild spectrum of autism but it still meant that she was different than most kids.  She would repeat things and had a hard time making eye contact which also made it difficult for her to make friends outside of her school group.   When Marlin would step in and try to manage things for a very capable Nemo, I could see myself doing the same thing.   I would answer for her if someone asked a question.   I tried to not expect too much out of her or expect her to do things most kids did like clean her room, wash dishes or put her clothes away.  I did all that for Amber because she was special and I wanted to make her life as easy as possible.   She didn't rebel like Nemo - at seven why should she?  Mom was doing everything for her.  I worried because she could be talked into things so easily and I felt like her way of comprehending danger was not like most kids.   But then how many seven year olds actually understand that not every adult is nice like your parents or teachers?   I tried to never let her out of my sight when she was not at school.  When Marlin's worst nightmare comes true and Nemo is taken away, I held back tears because that is every parent's worst nightmare.  I sat in that dark movie theater and watched how Marlin handled seeing his child abducted, and he didn't give up.  He constantly went out of his comfort zone with Dory (voice by the incredible Ellen DeGeneras), a blue fish with short term memory loss.   I knew, like most parents in the theater, that I would stop at nothing to find my child.   This all sounds plenty scary and very un-Disney.  If it the story had a human family dealing with all this loss, it would have been sad and awful, but the brilliant people at Pixar were smart enough to make the protagonists fish so you could have a connection but not feel like it was too much like real life.

When Nemo is  captured by a well meaning dentist who thought that he was helpless in the big ocean, he puts him in a fish tank where he'll be safe.  Nemo meets a wide group of fish who are happy being confined to a glass ocean.   They get fed, there are no predators and life is predictable.   He meets Gil, a fish with a broken fin and scars on his face and body who wants more than a safe existence - a stark contrast to Nemo's father Marlin.   Gil doesn't see Nemo as a kid with special needs, he sees a kid who wants to be treated like everyone else and can do things that the other fish can't.   There is an urgency to get Nemo out of the tank before the dentist's niece Darla comes to see him since she has a reputation for killing the fish her uncle gives her.  So begins Nemo's quest to get back to his father and the ocean - a sojourn that he's up for because despite his father being overbearing - he still loves and needs his daddy. 

Marlin's quest has him battling not one but three sharks, a mine field, jelly fish and East Australian current and the belly of a whale.   He meets these challenges head on and realizes that he was wrong to stay so reclusive with his son.   That's an instinct that parents who have kids with a disability have to fight - the need to keep them home and safe is admirable, but flat out it's not living.   They'll never know how to fend for themselves if you don't push them and yourself out of that comfort zone.  They'll never get where they need to be as a human.   Dory's advice is simple, "Just keep swimming,"  or just keep moving forward no matter how hard it gets.   It's been tough for me to see kids not want to play with Amber when she was smaller.  I had to fight the urge to intervene, but she eventually learned what to do and what not to do to engage other kids in play.   She can now talk about things that interest them and not repeat herself too much or get obsessed on one subject.   Sometimes the kids on the playground would walk away and she would "keep on swimming" or playing until another group came by and played.  It always fascinated me how the ebb and flow of a playground worked, very much like an ocean - kids would flow in, kids would flow out.  If they wanted to play with Amber, great - if not - then she was happy to play on her own - for her it wasn't personal.   So little by little, we would go shopping, out to lunch, then dinner, then to the movies, then to places that actually had waiters - each time it was a baby step to establishing what was normal and what was to be expected, but my eagle eye was always on her.   

Being overprotective is something I was always afraid of being yet I couldn't help it because my daughter seemed to need me so much - and truth be told I liked being needed.   But I always wondered if I was crossing a line of demarcation in which my stepping in could be keeping her from making friends with other kids because I was afraid they would make fun or her or take advantage of her.   I got where Marlin was coming from - even trying to make Nemo's shorter fin disability seem like a good thing - a lucky fin.  When the other kids point out that he's different, Marlin tries to protect Nemo's feelings.   Subsequently his need to protect his son from everything backfires in a big way and he's somewhat responsible for Nemo being captured.   His guilt as a parent is a palpable.  Marlin's exchange with the spacey but wise Dory really hit home:

Marlin: I promised I'd never let anything happen to him.

Dory: Hmm. That's a funny thing to promise.
Marlin: What?
Dory: Well, you can't never let anything happen to him. Then nothing would ever happen to him. Not much fun for little Harpo.

That was my "Ah-Ha" moment - little Amber had to figure out things on her own.   Good lord was this movie more for kids or for their parents?  Again the amazing magic of Pixar is that their movies are generally at such a high spiritual level that you can peel the layers away and still find more universal truths.   Giving a child the self confidence to try new things or figure out how to solve their own problems is an invaluable skill.  When Amber has felt the sting of peer pressure, we've talked about how to handle it knowing that Max and I can't be at her side all the time.   Some of my proudest moments as a parent has been having her teachers tell me that she stood up for what she believed in even if it was unpopular and surprise, surprise - her friends still liked her.    Protecting her and telling her not to be who she is because it's easier to be accepted would have been terrible advice, but that would have been the easy route.  

Underestimating a child with special needs can be a big mistake.  Not allowing them to try something they want to do because you see failure at the door is not moving them forward - they have to learn from it and pick themselves up.  When Dory and Marlin are swallowed by a whale,  Marlin has a hard time believing that his ding-bat companion can actually understand what the whale is saying and that this mammoth mammal would actually want to help him.   In his frustration, he yells at Dory and makes a telling Freudian slip: 

Marlin: No, no more whale! You can't speak whale!

Dory: Yes I can!
Marlin: No, you can't! You think you can do these things, but you can't, Nemo!

He's so hard wired to say "no" and "you can't" that he doesn't realize that Nemo is trying just as hard to get back to him and not sitting passively waiting for his dad to show up.   Nemo is learning so much from Gil who doesn't see him as crippled that he is able to take the situation in hand and take control which he eventually does to save the day and Dory.   How many times, I wondered had I shut Amber down because I honestly didn't think she was up to the task, even though she had asked to try to do something new?    I came close to turning down a free trip to Six Flags over Georgia to ride Goliath and the Georgia Scorcher because I was pretty sure she would not be able to handle it (and because frankly I was afraid of heights and roller coasters).   But like Marlin, I faced my fears and had a wonderful time.  We had a blast riding seven roller coasters in six hours and we both come away from the experience closer because we tried something new that scared us.  

Later in the movie, when he and Dory must make a life or death decision, he asks:

Marlin: What if something bad happens?

Dory:  You have to let go and find out.

For me that one line sums up the whole movie. I'll have to let go one day and found out just what my little girlie bear is capable of.  I know that someday Amber will have to learn how to drive and the idea of that frankly scares the crap out of me (but then to be fair, doesn't it for most parents?)   But she's going to need to be independent and she can't do that expecting me to drive her everywhere.   Even taking busses will require her to pay attention and learn which ones will get her home and which ones won't.   She's going to have to take responsibility for that to get to work on-time.

So as I sat in the movie theater in 2012 with my 16 year old daughter next to me, I realized that while I hadn't completely let go, I had eased up on her.   She has her own blog on Fan Fiction.net which is pretty popular and she gets good feedback.   She's gone on church outings with other teens without my eagle eye because she just needs to be a teen without Mom around all the time.    We're looking at her being able to volunteer on her own at an animal shelter.  Like Nemo, she'll learn how to put her skills to work and have a productive life - I just have to let it happen.   Ironically, she's always wanted to be a background animator for Pixar, those Czars of awesome who can take the tale of a little fish and make it something everyone can relate to.    Between 2003 when I first saw this amazing movie and 2012, a lot of things have happened some good and bad: my girlie bear has gone from elementary school to high school, I've lost a job, found one, lost one, found another one, fought depression, had animals pass away, etc .  But if I've learning anything from Finding Nemo, it's that you always have to keep on swimming. 

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.