Orange like an ORANGE

Kassie had a best friend when she was little.  She was four months older than Kassie.  Her mom and I were best friends, so naturally we spent a lot of time together.  I know that you should never compare kids, but since we spent so much time together, it was hard not to.

I based Kassie's abilities in what her friend was doing at her age.  So if she could do something at 24 months, I waited until Kassie was 24 months to see if she could do the same thing.

At 34 months, her friend knew all of her primary colors.  I was impressed.  She was a brilliant little girl.  I started to show Kassie her colors too, and nothing.  I figured that I just needed to wait the four months, and when she was 34 months, then she would know them too.

I started trying to show Kassie her primary colors using blocks.  I would sit down with her and focus on one color at a time.  We would play with just red blocks.  Then I would find anything I had at home that was red, and incorporate it with our play.  I would say the word red multiple times.  I did this with every color.  However; using this form of play did not seem to help.  She still did not know her colors.

One afternoon, when Kassie was almost 36 months, I was sitting with her.  And again, I was trying to teach her the primary colors.  We sat on the floor with the colored blocks.  It was the same routine. Give me the red block, Kassie would hand me the blue block.  Give me the green block, she would hand me yellow.  My patience was getting the best of me.  I just could not understand why she could not get it.  The only block that she ever got right was orange.  I decided to take a break, and let her watch a Disney movie.  I went to the kitchen, and as I grabbed something from the fridge.  I saw an orange in the drawer.  Something clicked, it was orange in color and it's name was orange.

I grabbed Kassie, turned off her movie and sat her down with the blocks again.  Instead, this time I asked her to give me the block that was the color of a strawberry.  She handed me the red block.  I said, how about the one that is the color of a banana, she gave me the yellow block.  What was happening?  She KNEW her colors, but she did not KNOW them.  She associated items with them. Even with the color of our car at the time.  I said, give me the block that is the color of mommy's car, and she gave me the blue block.  I did not know what to think of this.

The internet back then was not what it is today.  I didn't know where to go with this.  I asked other moms and my own family, they all said, it's normal.  She will eventually learn her colors.  I let it go, and waited patiently for her to learn her colors.  If I could only go back to that day and if I had only followed my motherly instinct.  Things would have been so different for my Kassie.  Deep down, I knew that she learned differently I just didn't have the knowledge to put the pieces of the puzzle together.  I was not as nervous, and I felt that she did know her colors, just not in the same way other kids did.  Learning disabilities were not spoken of much when I was in school.  At least not that I can remember.

Looking back, I also believe that growing up in such a small town can hurt sometimes.  There were no montessori schools, and since I was a stay at home mom at the time, there was no need for daycare.  She only played with a few friends and most were younger than her.

Eventually, Kassie did learn her colors, but much, much later.

Personable and happy

From birth, Kassie had personality.  She was friendly, and she was always happy.  She smiled at everyone, and was not afraid of strangers.  We could be at the grocery store, and as I was holding her with one hand, and using my free hand to put the groceries on the belt, she would reach out to the cashier to hold her, or whoever was in line in back of me.  Most of the time, people would reach out for her too.  She just had this magnetic personality that drew people to her.

Kassie was developing just fine.  She was doing everything that the book "What to expect the first year" was saying.  She had a binky that I took from her at six months.  She was a little early in walking in my opinion.  She started walking at just eight months.  I could have waited a little longer. Once that happened, there was no stopping her.  She was all over the place.  She was a climber and she liked to hide.  She was non stop, and it was exhausting. Fortunately, we decided that I would not go back to work after she was born.  So her schedule, became my schedule.  

Kassie managed to get into any kind of trouble that she could.  I could not take my eyes off of her for one second.  

On the morning of her first birthday party, I prepared her last bottle.  As she drank it, I grabbed all of the bottles from the cabinet and threw them out.  When she finished her bottle, I added that to the garbage as well.  She never asked or wanted a bottle again.  Yes, it was that easy.  No tears.  The transition was easy from bottle to sippy cup.  

At her birthday, Kassie was a host.  She walked from table to table and sat with whoever called for her.  We constantly had to look for her and see where she had landed.  When it came time to hit the pinata, she loved the attention that was being given to her.  She liked the applause and was smiling ear to ear as she was cheered on to hit it one more time. Cutting her cake was no different.  She loved being the center of attention.  She had no problem running to the center of the room and dancing when music came on.  She was not shy, one bit.  

In my opinion, she was extremely smart.  She had rhythm and was very coordinated.  She could feed herself with accuracy and she LOVED food.  

Kassie was a quick learner when it came to certain things.  She could follow and watch people do things, and she would remember.  

She did have some temper tantrums, who doesn't?  Even then, I laughed at how smart she was.  The first tantrum she threw, she dropped to the floor, and threw her head back. Although it was carpet, it still hurt her head.  The next time she did it, as she threw her head back, she made sure to brace her arms to prevent her head from hitting the floor.  She had a good memory.  

There was no indication that anything could be wrong.  She was perfect....to me. 

Ten fingers, ten toes

September 10th 1996 started out as any normal day.  I knew that I was close to going into labor, but did not feel as though it was that day.  Around 4 in the afternoon, I started to feel some small contractions.  My neighbor had come over to visit, and she quickly ran home to make me a tea.  She told me to walk around the block and that it would help. Pretty soon, everyone on my block knew that I may be going into labor, and all the kids from the neighborhood were walking around the block with me.  After a couple of hours, we called my OB and he recommended that we head to the hospital.  

Sierra Vista is about an hour away from Douglas, so we informed our family, and just Sal and I left.  When we arrived, the nurse that was helping me was so nice, and she quickly connected me to the fetal monitor.  By then, the pain was getting worse, but I was showing no signs of dialating.  My water was intact, and the Dr. felt that it was false labor. I was instantly scared, the pain was so bad, that I was nervous.  If this pain was false labor, what would real labor feel like.  My nurse was not comfortable sending me home. She saw how much pain I was in.  She said she would take her time filling out discharge paperwork as to give me some time.  After about an hour, she finally couldn't wait any longer.  We had decided to get a hotel rather than make the drive back home in the middle of the night. When I sat up to get off the bed, my water broke.  

She immediately ran to get a test strip.  Her instinct was right, something was not right. My water was not clear, it was dirty.  The test strip confirmed that there was meconium in the fluid and that Kassie was in distress.  Immediately things went from normal to bad. Since I was still connected to the fetal monitor, you could hear Kassie's heart beating steadily.  Then, once my water broke, and I started to have contractions, her heart would slow down, and then come to a complete stop.  The doctors did not think this was really happening, thinking that I was moving too much and causing a false read.  

They ordered an internal fetal monitor which could accurately measure her heartbeat. Sure enough, once I had a contraction, the same thing was happening.  They tried multiple things to help her.  Nothing was working.  I had my eyes closed for most of the time, because my contractions were not giving me a break.  They gave me a medication in my IV to stop my contractions.  When they stopped, I opened my eyes, and there were at least 15 nurses and doctors in my room.  When I looked at Sal, his eyes were red and swollen, I knew something was wrong.   

I was wheeled out of the room straight to the OR for an emergency C-section.  All I could do was pray.  As I laid there waiting for this surgery, I couldn't help but have visions of coming home empty handed.  It was as if I was dreaming, but the dream was so clear. Walking into her nursery, and no baby to lay in the crib.  I tortured myself with that vision for what seemed like hours.  

The doctors were fast, and within minutes, I was being cut into.  I was very aware of what was going on.  I could feel the pulling and tugging, but no pain.  Sal was by my side watching the whole thing.  When Kassie was born, he looked and said.  "She's here."  I waited for a cry, but nothing.  They took her and immediately started clearing out all of the meconium from her mouth and nose.  It took a while before she finally cried.  They took her and barely gave me a glance.  There was no laying her on my chest for me to examine.  I didn't have the chance to count her fingers and toes.  She was gone.  Sal went with Kassie and I was left there to pray and hope that she would be ok.  I kept her little face in my head.  For the second I saw her, I knew that she was not a healthy pink color. She was purple/blue.  I later found out that it was because of the lack of oxygen.  

As I sat in recovery I could not get the vision of this limp baby being taken away from me. It took a while for them to come in and tell me that she was doing great, and that they were just doing all of the necessary tests on her.  

About an hour later, I was wheeled back to my room, and I anxiously waited for my princess to meet me.  They handed me this perfect little girl all swaddled and she was now a pretty pink color.  She looked right at me, and it looked like she had blue eyes.  I immediately unwrapped her, and she was perfect.  She had a small red birth mark on her forehead, and when I asked the nurse about it, she told me it was a stork bite.  We laughed as her dad said he wanted to find that stork for biting his little girl.    

For two days straight, Kassie had endless visitors at the hospital.  She was a social butterfly from day one.  From one person to another, she was never not being held.  She slept well, and was such a great baby.  

When we finally made it home, I thanked god for lending her to us and letting us bring her home.  She was everything we had wanted and more.  

I want to end this post with a disclaimer and make sure and clarify that I DO NOT place any blame on the hospital staff where Kassie was born.  Based on articles and research that I have done, there is a possibility that Kassie's learning disability could have come about at birth, based on the fact that she lacked oxygen during my labor with her.  It is not something that I have pursued, or even plan to. Like the title of this blog claims....she is perfect to me.  I give nothing but praise for the fast acting nurses and doctors that were able to deliver her and helped us take home that pink little bundle.

Decisions...

When Sal and I got married in August of 1993, we were young.  I was three months shy of 20 and he had just turned 22.  We started dating in early 1989.  I was a sophomore and he was a senior.  We are high school sweethearts.  Let's be honest, the odds were against us.  We wanted to get married, we didn't HAVE to get married.  I think that we waited a little longer to have kids because I wanted to make sure that the right amount of time had passed before anyone could question that.  We lived in a very small town of thirteen thousand people.  Also, we really did want to travel and have fun and experience life.  Blow our money away and if we had a penny to our name the day before payday, then we didn't have to worry about another mouth to feed.

Sal and I had been married for a little over a year. One night, I was visiting with my parents one and my dad asked me when we were going to have a baby? It surprised me because it was just not something I expected him to ask.  My parents were older.  I was a complete and total surprise. My older sister was 17 when I was born, and my middle sister 11.  I became an aunt at five years old. There seemed to be some urgency in his voice, but nothing that I caught onto at that time.

Looking back, I think deep down he may have felt that his life was going to end sooner than later. Sadly, my dad passed away eighteen days before Kassie's first birthday of a massive heart attack.  He was 61.

After that conversation, I talked to Sal and decided it would be the right time to try.  It wasn't easy. Several months passed with no results.  I did not worry, I knew I was young, and that it would eventually happen.

In January of 1996, I took a pregnancy test, and it was positive.  I was so excited, and I couldn't wait to share the news.  I was at work and Sal happened to have the day off.  I called a friend of ours that owned a flower shop and asked her to put together four bouquets of pink and blue balloons.  One set for Sal, one for his parents, one for my parents, grandmother, sister and niece that lived in the same home and the last set for my other sister, her husband and daughters.  She delivered them, and everyone instantly knew.  Everyone was so excited.  On my side of the family there had not been a grandchild for 11 years.  Sal's sister had just had a daughter in December of 1995 and his brother a son in November of 1994.

After my first appointment, I was told that my due date was September 16th, 1996.  I laughed, Mexican Independence day.  That will be fun!  It's funny now, but the first thing I needed to confirm was if the due date was within the Virgo range.  Darn, Scorpio's and Virgo's....this should be interesting.

My pregnancy was very uneventful.  Normal morning sickness, not horrible.  My appointments were all within normal limits.  Never any concerns.  Around July, I was swelling a little too much, and retaining a lot of fluid, but again, no concern.  My blood pressure was great, so I had to avoid salty foods.  And granted it was the middle of Summer.  All in all everything looked great.  Her ultrasounds had been perfect.  For me extra perfect.  Her last ultrasound confirmed that she was girl, and that she was going to be a dancer.  From day one she was not shy, it's as if she knew we were watching.  She was on stage.  Showing off and yes, dancing.  I am not exaggerating, she was turned out in second position and was doing plies.  She looked like a little frog.  Every time I was around music, she would "dance" in my belly.  

Once we confirmed that she was a girl, we instantly decided on her name.  It was easy because we had picked her name when we were still in high school.  Kassandra with a K and Paulyna with a Y as her middle name.  We both had always loved the nickname for Kassandra so Kassie it was.  The middle name was for a Mexican singer named Paulina Rubio that I really liked and also super model Paulina Porizkova.  I just wanted to change the spelling a little bit.  As she grew up, she really disliked her name, and always asked why we didn't make Paulyna her first name.  We told her she could always go by her middle name if she wanted, but she said it was too late.  She was stuck with Kassie.

With Kassie being our first, and the first grandchild on my side of the family for a while, she was instantly spoiled.  She probably had about 40 to 50 pairs of shoes before she was born.  Her closet was to be envious of.  At least I was.  I didn't care.  My mom, sisters and nieces went nuts in preparation for her arrival.  Everyday someone would come with a new gift for her.

Sal and I worked on her nursery for a few months.  We even had her pink carpet special ordered.  The theme was carousel horses.  At the time, I loved and collected carousel horses.  I even made a big huge pink bow for the door.  She was to be our present.  Little did we know the complications that she would have.  And that her nursery came so close to never being used.

My new found passion...

I have to start by saying that although I wanted to start this blog four years ago, I decided to wait for the sake of my daughter.  First and foremost I needed to focus on her, I needed to make sure that she was where she needed to be, and that she would be okay with me sharing personal and emotional stories. Fortunately, she is now in college and living in NYC, and so far, she is doing amazing.

The first struggle that comes from having a child with a learning disability, is that you feel alone.
You feel as though there is no one you can talk to, or share your feelings with.  At least that was how I felt.  I want this blog to help parents that feel alone.  I want you to know that you are not alone, and that there are a lot of us out there.

My passion for parents and children with learning disabilities happened four years ago.  It was when I sat at my daughters first IEP meeting for a newly diagnosed learning disability.  Prior to that, I felt that I was pretty smart and involved in my children's education.  I kept on top of their homework and their grades, so I felt comfortable attending this meeting alone.  I knew Kassie was struggling in some classes, but I wasn't too concerned.  I quickly realized that I had no knowledge when it came to IEP meetings.  Nothing could have prepared me for that meeting.  As I sat there with her case worker, her counselor, the school psychologist, and ALL of her teachers, the situation quickly became intimidating, frustrating and confusing.  

I left the meeting confused and extremely concerned.  I sat there and tried to process what I was being told, in what I call another language. I tried to interpret it and still remain calm while trying to come across strong and pretend that I knew exactly what they were talking about.  I had NO clue.

The only words that stood out to me was an IQ of a sixth grader, never will go to college, special education, 5th grade math level, 7th grade reading level, never will go to college, try to help her graduate.  I can still hear them to this day.  Never go to college was the phrase that kept repeating itself in my brain.  It was so much to process, and especially when she was in 9th grade.  To sit there and be told that your child is so behind, and that her chances of going to college are slim to none is heartbreaking.  When I finally made it to my car, the few tears that I couldn't control in the meeting turned into sobs.  How?  How did this happen?  How did she slip through the cracks?  How did I let this happen?  How didn't I catch this?  I felt as if I had failed her.  

This blog is going to reflect a lot of things.  First and foremost, it's going to be about Kassie's chapters.  Because this is not her story.  Her story is just beginning.  These were chapters in her book. She has many chapters ahead of her, and god willing a very long book.  

I'm going to go through the mistakes I made as a parent, and about how parents of young children can avoid the same mistakes that I made.  I'm going to express my support and love for the teachers that helped and loved Kassie a long the way.  And I am going to express my anger and disappointment for the teachers that sat back and watched it all happen and in some cases, made it worse.  I will not mention the teachers by name, because I don't need any lawsuits.  I hate that I can't mention the amazing ones by name, because they deserve nothing but praise.  My consolation with this, is that I know that they do what they do because they LOVE it, and they don't expect or want recognition.  It is their job.   

And lastly, it's going to go through the process of me fulfilling my passion of becoming an advocate for special education children and their families.  Especially Spanish speaking families who are twice as lost in those IEP meetings.  It's not going to be an easy road, because as I start this process, I will still have my full time job, and I will be using all of my free time to read, research and attend as many conferences I can until I feel that I am truly ready to take on my first IEP meeting with confidence that I can make a difference in a child's education, and ultimately their life.  

Fortunately, I have some free time now, because my special education child is away at college, the college she was never supposed to attend.  And with that being said, one of my goals with this new adventure is to make sure that special education students out there, the ones that are being told that college is not an option, can prove to some of these teachers and educators that they were wrong. I want to help fight the stigma of "Special Education" and help these kids feel powerful, and find their self-confidence to face the difficult times.  As a parent of one, I know just how many difficult times are ahead of them, and how many sleepless nights a parent goes through.  There is no pain, like the pain a parent feels when their child is hurting or suffering, 

On that last note, I am going to mention that a child with special needs suffers.  They suffer a lot. They have emotional suffering, self esteem issues, confidence issues and that is just some of it. Is it a life threatening situation?  No.  However, everybody handles situations differently.  I have always had and always will have empathy for other people and their situations.  And although there are kids out there suffering the effects of chemotherapy or other health related issues.  The pain can be just as bad. This is a topic that I will address with a separate post later on.