Monday, November 24, 2014

Here Comes The Sun

"Beautiful and graceful, varied and enchanting, small but approachable, butterflies lead you to the sunny side of life.  And everyone deserves a little sunshine".  ~Jeffrey Glassberg

I remember the day I toured Monarch Academy...  I walked in after having a brief phone call with one of the directors and learning that their teaching styles and philosophy were on par with what I wanted for Anabelle.  I sat in on what was at that time the Mommy & Me Early Preschool Class for 2-year olds and I toured their indoor playground, bathroom area and kitchen.  I was not planning on just dropping Anabelle off and leaving if I enrolled her so I needed a preschool who would understand that.  I also needed a preschool to understand the importance of children developing at their own pace, that potty training is in fact a developmental milestone, (Anabelle was not potty trained at her time of enrollment - and did you know that there are actual preschools out there who CHARGE parents if their children have an accident or are not potty trained?! Despicable!) and that children need to learn through play.  I found it.  I couldn't believe it.  Everything they said and everything I read sounded so perfect.  If I didn't see it with my own eyes I would say it was all too good to be true.  I remember tears filling up in my eyes thinking that I actually found our 1st home away from home where I could trust my babies to be taken care of and supported.  I agonized over the decision to finish her last speech session without reenrolling her, however  finances were a large factor and it was a natural progression to move onto a social atmosphere. So, we enrolled Anabelle 2 days/week and on Tuesdays and Thursdays, Lennon and I would drop her off and then sit in the back of the classroom and enjoy our view.  It was nice that I was able to bring him even though I had an abundance of help with babysitting from my family who lived close by.  That was a huge victory to cross off of what felt like a never ending list of important to do's.  Still so grateful till this day for my family at Monarch.  

So, there I was...  a self proclaimed recluse now committed to leaving my house twice a week with my babies to a place where other parents and children were.  The very thing I was trying to avoid.  The catch-22 of it all.  The good news is I was not the one in charge.  I got to let Anabelle be in a classroom with a teacher and other kids and I got to watch how she acted, reacted, played and learned.  I could also watch her without her knowing as the preschool has monitors set up in a room off the kitchen.  She separated from me easily, which made me happy and ok, maybe a little sad.  Just a little!  I was grateful she was so open to new things and that I could leave if Lennon needed me to.  

Anabelle turned 3 years old just a couple months after that and all I could think was that I couldn't wait for Lennon to turn 2 so I could enroll him also.  Just 10 months to go!  Or so I thought.



Sunday, November 23, 2014

A Hard Day's Night

We celebrated every milestone in the Kornick household.  No matter how big or small, it was a growth in a positive direction and worthy of praise.  One step forward was always something I longed for and when it happened, even in the slightest of ways I felt so relieved.  So grateful.  And then I would watch and wait until the next step.  Almost obsessively.

While Anabelle was working so hard on her speech I was determined to not have to go through this again with another child, (like it was my choice).  I brought Lennon to every speech session in the hopes that he would somehow benefit from sitting there and hearing the lessons, (why not, right?).  During Lennon's infancy I did not have any concerns that prompted me to start any early interventions.  Other than the fact that he was the opposite of Anabelle in that he was up more often to nurse at night, needed to be held constantly and babbled like crazy there were no "red flags" in his early behavior.  He was alert, had great eye contact, smiled at me when I smiled, etc.   Everything an infant was "supposed" to do.  I have read and been told about so many developmental charts my brain feels like it just might explode.   While Anabelle was making great strides at speech, Lennon was happy to watch from the sidelines... as long as he was nursing or snacking.  I could take that kid anywhere if I had his favorite snack to occupy his time so I could focus on not losing Anabelle.  She was a runner and I would often need a friend or family member to accompany me if I went to the park or the mall (or anywhere) because of my worry about Anabelle running away while I was nursing Lennon or tending to him.  It was always about Anabelle.  And I mean that in a good, not negative way.  I was just so worried about her and scared to death that she would run in the street or into some strangers arms, which was not far fetched considering she would often times ask strangers for their food or try to share her food with them.  

Lennon cruised the developmental chart, month by month.  Sat up around 5 months, cruised around 9 months, walked around 13 months, smiled, laughed, waved and was a very happy baby.  His favorite food was beans.  Pinto beans.  He was on the right path and I was feeling so good about the fact
fact that we were seeing the light at the end of the tunnel with the interventions for Anabelle.

It wasn't until Lennon's 2 year approached that I began to see the signs.  Again.  He had words, but not as many as he "should".  And he was also not stringing 2-3 words together.  He was aware of his surroundings and I always knew what he wanted, however he too had a hard time communicating his feelings.  And he too was a screamer.  I had so many days where I questioned everything and wondered why and how and obviously it was something I did to have TWO children with concerns.  Nothing could ever be "normal", right?  I began to just avoid public situations.  I remember one time I took Anabelle to an indoor bounce house near my house.  I walked in with both kids, sat Lennon down with his snacks and went to play with Anabelle.  She freaked out.  Screaming and crying.  It turned out the loud fans in the bounce house seriously affected her and I didn't realize it until that moment.  Lennon didn't even get a chance to play.  He just sat there, eating his snacks while I tried to calm Anabelle.  And then we left.  And I was at an all time low, feeling like there was nowhere for me to go where I wasn't worried about losing a child, where my children wouldn't be scared or where people wouldn't stare at them or question their "weird" behavior.  I clearly lacked the confidence as a parent to stand up for my children.  Mainly because I was still so full of questions and seeking answers.  Now for both of my children.  There had to be some place for me to go...  Someone who would understand and be supportive.  I know I had the support of a handful of friends, and that it was more me.  More the fact that I was afraid of how people would interpret my children and that by me constantly translating for them they might begin to question their development also.  And then I remembered the great advice the behavioralist gave me when she came to my house.  Find a great preschool for Anabelle.  One where she would be in a low teacher:student ratio.  One where she would be allowed to explore and learn through play.  And one where she would be supported and loved.  So, when Anabelle was a few months shy of her 3rd birthday and Lennon was just over a year I enrolled her in a local family owned preschool that welcomed us with open arms and made us feel like we were apart of the family.  Light in sight...

Saturday, November 15, 2014

Eight Days A Week

Parenting = 24/7. Right?  I mean, babies go to bed, take naps and when they're older go to school and that allows for some free time, however we are never truly off the clock.  And when you have children your days get longer and your nights get shorter.  That's pretty much how I felt after Lennon was born.  That poor kid didn't stand a chance from the day he was born...  as much as I was absolutely consumed with love for my baby boy, my miracle, if you will, I was totally and completely consumed with worry about my baby girl.  And knowing what I know today, this absolutely pains me to write.   

How was I supposed to do this exactly?  Having 4 months to prepare for baby number 2, while planning a move that overwhelmed me to no end, all while being thrown into a full blown search for answers for Anabelle left me feeling all kinds of lonely.  And there it was.  I was lonely.  I mean, my husband was amazing and supportive and the best daddy ever, but I really did a number on myself with it came to the "why" and the "how" of it all.  I wasn't very good at expressing my fears or worries, which often led to me holding it all inside.  That and I felt burned.  I recently learned about The Seven Habits of Highly Effective People and the one that stuck out the most was "Seek First to Understand, Then to be Understood".  I wish I knew this back then and that I would have had the guts to tell a couple people to seek first to understand what I was going through.  Guess I do now.  

Anabelle often screamed at me when she was mad.  I mean, loud, high pitched screaming.  It was as if she was frustrated because she couldn't communicate her feelings and so she would just scream.   And every time she did it I felt as if everyone was watching me.  I was "that mom" who let her kid have tantrums and scream.  I worried so much about that shit.  Most a days I felt like screaming myself.  I would be lying if I said I never did.  As much as I was told Anabelle was developing in a forward moving progression and she was doing great I constantly wondered if somehow I was missing something.  I felt helpless during her visits with specialists, like I was sitting on the sidelines with Lennon and thinking that he would be our talker and we would never have to go through this again.  It was almost as if I had jinxed myself.

I got a lot of suggestions and recommendations of what I should or could do for Anabelle, but nobody had any answers.  When Anabelle was being assessed for Regional Center they sent someone to my home to observe her and to ask me a few questions.  She was a kind woman and she was one of the few who really got Anabelle.  She told me to take my time in finding a great preschool for her and that she would be fine.  She just needed to be allowed to develop at her own pace.  Why was I in such a hurry to move her along?  Oh yeah, because I was the only one who could translate for her and she struggled with communication.  If I could just fast forward to a day where her struggle was over I would have done it in a heartbeat.  Still would.  

Over the next few months I continued to take Anabelle to her speech appointments and with Lennon in tow we would sit quietly while they worked so hard on her expressive and receptive language.  Small phrases that consisted of 2 and 3 words that so many children her age were uttering without any interventions at all.  What was that like, I wondered.  I had no concept of what it was like to have a "typically developing child".  I remember having conversations with Eric that ended with me asking if I was ever going to have a conversation with my daughter.  An actual conversation.  I hit a wall and just couldn't see it.  And then, as if she knew I was hitting a wall, Anabelle had an amazing and memorable day at speech.

For some reason Anabelle really struggled with the word "I".  She had never said it.  No matter how many times her therapist tried to get her to repeat it, she didn't.  Couldn't?  Wouldn't?  It just didn't happen.  When Anabelle wanted something she would just say the word, rather than "I want" or "Can I please have..."  For example, "nanas" mean she wanted to nurse and "lechitas" (spanish for milk) meant she wanted milk.  Her speech therapist was determined to get her to say "I" followed by want and then the item she wanted.  After several attempts of trying to get Anabelle to repeat after her, she made a series of sounds, "ah ah ah ah" which Anabelle finally repeated. And then the therapist, without skipping a beat, said, "I"!  And Anabelle did it!  She repeated after her and said, "I"!  Eric was there that day and he and I both cheered and I cried.  Who would've thought that such a small milestone would instill such an emotional response?  It was amazing.  And it was the sign of hope that we all needed.

Tuesday, November 11, 2014

...With A Little Help From My Friends.

When I decided to write this blog, I made the decision to just put it all out there. I no longer felt the need (or want) to keep everything inside and since writing it all down has helped me in the past I turn to all of you to continue to do so.  There is no "road map" to where I am going with this blog.  I am pretty much reliving my life from Anabelle's birth through today and it is my hope that you'll go along for the ride.  I also feel the need to let you know that because I don't have it all mapped out, I will often feel the need to go back to before my previous blog entry was based upon.  And on that note...

Having a baby for me meant I was able to be the mother I always envisioned I would be.  I would share moments of firsts with those around us and I would bask in the glow of what being a new mommy most often times means.  And I did.  Anabelle was such a joy.  My sweet angel of a baby who slept and nursed and cried just enough to make me feel needed as her mama.  She hit her milestones and did what she was "supposed" to do through her 1st 18 or so months.   I had no idea what I was doing as a mother, but I knew she was mine and she was amazing.  And Eric... oh man.  To see him be a daddy just melted my fricken heart.  Still does.

Being a new mom and having a child with behaviors, or a lack of behaviors, that are cause for concern can be so terrifying.  And the circle I surrounded myself with at the time lacked the empathy I needed which made me feel completely alone.  The only guides I had to go by were my friends babies and by their development, Anabelle was so behind.  She just was not doing what they were doing.  And instead of building a mountain of support I felt a whisper of "what is wrong with her" and could just feel that all eyes on were on her.  I was even told by a friend during a play date that she was told Anabelle is Autistic.  Which at that time just crushed me.  Absolutely crushed me that the people I trusted to be my friends and with my fears about what could be wrong with my baby girl were talking about her behind our backs.  The truth of the matter was Anabelle was developmentally delayed and did not have a diagnosis of Autism.  I had taken her to doctor appointments, had her well visits and had her seen by a neurologist and an eye doctor.  I put her through assessments and answered 100's of questions.  She was just developing at her own pace is what I was told.  And I agreed.  Being a "late developer" was genetic as I didn't talk much until I was 3 or 4.  The puzzle was Anabelle's to put together and she was doing it one piece at a time.  And while I could offer her support to help, there was nothing I could do to rush the process.

None of this stopped my closest friends from talking about her as if she was Autistic.  And in a world where self doubt was in abundance, the last thing I needed was the shadow of doubt that was cast upon me by those around me.  For me that was the end of it.  I needed to disconnect.  Education was the key and it was clear to me that in my darkest of moments I was not where I needed to be.  The road ahead was a scary one and even though I had been assured she was "fine", I couldn't help but still be so worried about my baby girl and how the world would perceive her.  Up until that point I was in a world where people made comments and stared and because they did not understand what was going on with her they talked about her behind her back.  And while she did in fact talk, but often did not respond to her peers when they talked to her, I felt the need to constantly translate for her.  And speak for her.  I knew what she she wanted and what she meant.  I always knew.

When Anabelle was 21 months old I gave birth to a healthy baby boy we named Lennon, after our favorite Beatle.  And 15 days later we moved further north for cheaper rent and to be closer to my family.  I began to seek interventions and after a lengthy process and being turned down by the Regional Center for free services, (she did not qualify because she was not "delayed enough") we sought out the help of private speech therapy. Which of course was not covered by insurance.  I am not a religious person.  I have often used the term "I feel blessed" because I was raised in the church and I understand the sentiment behind it.  Today I remain religion free and spiritual by nature.  I say this because the next sentence I want to write is, "I feel so blessed" to have family who has helped us so tremendously in the past and today.  Without the help of my family and my in-laws we would not be where we are today.  I was able to sign Anabelle up for speech twice a week and with itty bitty Lennon in tow we had begun our journey of the ever so important early intervention.

Saturday, November 1, 2014

What about Autism?

As if worrying about getting pregnantspina bifida or an invisible twin wasn't enough, now I had to worry about a neurological disorder?  Couldn't I just enjoy my baby and not be filled with worry and guilt and like every milestone, or lack thereof, wasn't a sign of anything other than my baby just developing at her own pace?  I realize how whiney that sounds.  In the spirit of total and complete honesty, I gave you whiney.

The thing was, I didn't have to worry about Autism.  But when your husband is sitting beside you, holding your infant and asks, completely out of the blue,  "what about Autism"? you take a moment to wonder.  And I know he wasn't asking because he was worried about it (after I asked him if he was actually worried about it and he said no).  He was asking because was being a good parent and was trying to stay ahead of the curve by informing himself with what potential symptoms were and what we should look out for.  I honestly don't remember how the pediatrician answered that question.  I should have paid more attention.  I was probably too busy worrying or staring at Anabelle.  I do remember thinking that I would try my best to put it out of my mind and not obsess over every little thing she did.  Or didn't do.  And that lasted all of 5 minutes.

We went home and I am sure I went about our days as if that conversation had never happened.  I kept it in the back of my mind where nobody would find it.  I surrounded myself with friends who were also 1st time mommies and we met up every week for breastfeeding support group and playdates.  And when you have a group of mommies and babies to play with and keep you busy, you simply don't have time to worry about your baby, right?  Wrong.  For me it only meant that I was now surrounded by other babies who were doing things that my baby was not.  And it was painfully obvious that I wasn't the only one with growing concerns about how my baby wasn't developing "just like her friends".  There comes a point in an infants age when toddlerhood kicks in and everything is put under a microscope and being compared to those around her.  By the age of 2 Anabelle was not saying as many words as her friends or was only speaking in 1-word phrases instead of 2-3 words.  She was the last to sit up, cruise, walk and talk.  She would repeat words I said rather than answer yes or no questions and she did not have good eye contact.  She did catch on quick when I taught her sign language at 6 months.  Her preferred method of communication.  She made her needs known.  Just in the form of 1 word or by repeating the word I said last in a question I asked her.  Having said that she often did not respond when I called her name.  She seemed to zone out and liked to twirl.  She rarely, if ever, initiated play with her friends and often participated in tandem playing instead of interacting with the other kids.  And on top of drowning with worry over what was "wrong" with my baby girl I was 9 months pregnant, (did I mention I didn't know I was pregnant til I was 5 months along?  You can read about that over here).  It was the beginning of what quickly turned into an agonizing year.