4 Things I Learned Advocating For A CHD Childs IEP!--Part 2

    Even though my CHD daughter, Cora, has just finished 8th grade, I am still advocating for her.  In doing so it has required knowledge, patience, and a stern voice from myself.  So why share? Simply because our school journey has been a battle.  We have been through the school of hard knocks.  Many times I have been left wondering where and what do we do now!  I have learned some valuable lessons on advocating for a child with a heart defect. I have discovered along the way, that IEP's aren't really catered for special needs children with heart defects.  I have learned that educating teachers on Cora's obstacles is a necessity every year, and then throughout the year.

     I didn't have support when Cora began her schooling, not like the support available today!  I was one parent, unarmed, meeting with school board members, teachers, and the principal.  There was so much I didn't know, and felt like I didn't have much say in the direction of Cora's education.  As the years went on, I would attend these meetings with more and more knowledge.  However I wasn't ever listened to, or taken seriously.

      I recall one specific meeting when I was told, point blank, that they were the educators and I needed to let them do their jobs.  At that moment, I realized I was never going to be heard.  I was always going to be looked at as an over protective Mother.

  As Cora gets older class settings are constantly changing.  More classes, teachers, and responsibility.  For Cora it is stress, concern, and anxiety.  For me it is a time to put all my ducks in a row and begin educating all her teachers about her current IEP, and her additional diagnosis through Children's Hospital.  Is this easy?  Absolutely not!!  It is literally starting all over as if they don't know Cora.  It is spoon feeding information to the IEP teacher, as well as her individual teachers.  It is being patient yet stern at the same time.  It is listening to 6 teachers try to tell you they know your child better than you, and what will work best for her education.  IT IS EXAUSTING!

     That being said, I have found my footing during this very difficult and bumpy journey.  I have learned things that have helped Cora and the teachers connect.  I have learned that I have to speak loudly, patiently, and steadily.  I now have assistance from Children's who goes to the IEP meetings with me, and together we educate them and make them listen, for Cora's sake.

     So if you have a heart child in school, I have a few lessons I'd like to share that I've learned along the way.  Maybe one will assist you as you advocate for your school age heart child!

1. If you feel your child is struggling, speak up!  Make it a point to get with their teacher and express your concerns, and ask for an evaluation.  Be persistent, they may dismiss you at first.  The sooner the ball gets rolling, the better educational chance your CHD child will have.

2. All evaluations, diagnosis papers, special needs issued by doctors, need to be given to the school at least a month before school starts.  I have copies that I give to the Principal, the IEP teacher to be, and once I get Cora's schedule, I send copies, I've scanned, via email to each teacher.  The earlier they have her records to review, the better they will be prepared for your child for the new school year. 

3.  Stay in communication and continue to be a hands on parent all year! I communicate at least twice a week, with Cora's IEP teacher.  I also send a monthly email to each of her teachers. I do this for several reasons.  

      A. To keep the lines of communication open, always.

      B. Checking in on any changes in school work, and classroom behavior.  I also use this time to inform the teachers of any behavioral changes at home, or concerns Cora has brought to me.

4.   Don't be afraid to communicate if the IEP isn't working.  This past year we had multi meetings to make changes to Cora's IEP because, certain goals put in place just weren't working for her. I know I may have agrivated her IEP teacher, but it's my duty to make sure Cora doesn't grow  stagnant in her education.

I hope these little insights were helpful.  If you ever have any questions or concerns about your IEP don't be afraid, or embarrassed, like I was.  I'd be happy to help you in any way I can.

Blessings until next time!

The Angst Within!

    Countdown to Heart Camp!  For the last two months, the majority of Cora's conversations are about her excitement for Heart Camp!  As time draws near, her excitement is getting more difficult for her to control.  Other facets of her personality start to creep in.

     I have gotten use to reading her personality signs, and most of the time I can identify when things start to escalate in her little mind.  It is wonderful to see my Cora's excitement for summer camp.  Her excitement includes being with other heart kids that won't judge, to having a week to be with children who can relate to things other heart healthy children her age may not.  But along with that excitement, I start to see the angst in her eyes, and the tone of her voice change.

     I see her anxiety start to over rule her excitement, and her body posture begins to change.  Then....the what ifs begin.  What if I have that counselor from last year who yelled at me all the time, and said horrible things to me and my friends?  What if the heat is so bad Mom I can't breath well?  What if I collapse like the girl did last year?  What if it storms really bad?  That this point it becomes my job to take hold of the what ifs, and bring Cora back to the simple positives.

Once the focus has changed back to the fun of heart camp, and what it means to Cora, we are back on the excitement train!

     I believe, for Cora, Heart Camp is like her home away from home.  I believe she looks at heart camp as her place to be her raw self, and not be judged.  I believe, for her, it's a safe place to share things she goes through, that she doesn't even share with me.  I believe that without Heart Camp, their would be more sad days, followed by more anxious behavior, and depression.

     I wish I was powerful enough to wipe all the anxiousness from Cora.  I wish I could tell her that all those what ifs would never happen.  I wish I could make everyday Heart Camp for her, but I simply can't!  I can however give her one week to flourish!  One week where her spirit takes flight!  I can give her Heart Camp!  

     So thankful for Cincinnati Children's Hospital and the wonderful folks who put together this one magical week each year!  Our family, especially Cora, wouldn't be the same without this glorious Heart Camp!

Blessings Until Next Time!

Drena

That Little Nudge!

     While I was pregnant with Cora, learning of her Congenital Heart Defect, I made a decision!  I knew this baby would be my only.  I just couldn't live through another pregnancy with the possibility of having another CHD child.  I couldn't bear to bring another child, fighting so hard, into the world.  I was determined that no matter what, boy or girl, she was my one and only child!

     Fast forward in life, and guess what?  I began to feel God laying before me options.  Options to think about adding another child to our family.  I was very hardheaded and didn't want to listen to the suddle hints.  I recall declaring to my husband, God would have to shake me silly before I would ever bring another baby into the world. 

     It is so sad to look back at this me.  I was so frail and young in my faith.  I thought I made all my decisions and, my way was THE way. I truly believed everything rested in my hands.  My family, and the entire world rested on me to take care of everything!  I'm so grateful God didn't give up on me then.  I'm so grateful God continued to mold and educate me.  I'm most grateful that God taught me the importance of leaning on him!  

     So there I was, middle of the night, sleeping soundly.  Cora was a couple years old now, and I was a hot mess of a CHD Momma.  But, I leaned heavily on Jesus, and began my journey of prayer.  So out of nowhere I had a conversation with God in my sleep.  Honestly I listened without saying a word.  That was the first time God spoke to me, and.....I actually heard him.  I remember my eyes popping open, clock read after 2am, and I began shaking my hubby's arm.  I could the words escaping from my mouth, and that little part in mind was saying, huh, what, am I recalling correctly?  Did God really just speak to me and give me these vivid details?  By now I was sitting up and about ready to explode with information.  I preceded to tell my hubby what I was told.  Smiling I informed him, it was ok to grow our family.  Our baby would perfectly healthy, no heart issues at all, and.......it would be a girl!  Sure enough time passed and all the extensive tests were done, and guess what........our baby was heart healthy, and a girl.  All I could do was smile at my hubby and say "I told so!"

    To this day I hold that moment with God dear to me.  I would walk the world sharing my moment with God, to give people hope, to share that God does more than just exist.  God feels, God hears, and God loves us.  Oh yes, I still fight this mental demon!  My mind still stumbles and I begin thinking everything rests in my hands.  That I must carry everyone in my family, and be the strong pillar that has all the answers, and everything under control.  But my daily prayers, and Jesus' arms to guide and carry me at times, that demon would take up permanent residence in my mind!  I believe with all my being that God gives us that nudge when we need it, and if we are open enough, we will hear him!  Some of the smallest moments are God's greatest!

Blessings Until Next Time!

Drena

A Giant Milestone!

     Sitting in the middle school auditorium Thursday morning I felt tears well up.  I was so overcome by excitement and pride for Cora.  This morning I was going to witness my 14 year old, CHD, daughter accept her middle school promotion certificate to high school!

     Knowing all that this sweet thing has overcome I was overflowing with such pride!  As I sat there observing a giant milestone in my daughters life!  Knowing she had less than a 30 percent chance of life after birth, I look at her sitting in the crowd of 8th grade students and praise Jesus!  To hear her name called by the principal, to hear students clap and Woo Hoo, and to see my miracle walk across the stage to accept her certificate, I couldn't help but cry.  I clapped and snapped pictures through my tears.  I was so proud of Cora!  It was truly an accomplishment I didn't think would happen!

 I hope as she reflects back upon this day, she sees her own accomplishments!  I pray she sees that all the difficult days, and moments when she said she wanted to give up, are floating thought.  I hope she remembers that she didn't give up, and God never left her.  This is her accomplishment!  She has accomplished something so wonderful, something so extremely difficult for her, something so many of us take for granted!  She accomplished elementary school, and middle school.  She may not have been an A student who was on the honor roll all year, but in her Dad and my eyes that doesn't matter!  As long as she strives hard, puts her best effort forward, and doesn't give up.......that's honor roll A's all day long for us!

Great job Cora!  Keep pushing yourself!  As I have said before baby, God has special plans for you, believe in Him, he won't steer you wrong!

A Little Spunk!

     Driving down the road with Cora she asks me to turn up a song.  As I do I see her straighten her back and sit a little bit taller.  Listening, I hear my daughter sing every single word with conviction.  She sang as if she felt every single word to the core.  As the words continue to fill the car, each sentence sang touches my heart.  This song is more than just an awesome song for my 14 year old.  This song is so very much more.

     As the song completes, and the radio is turned down, I see the smile still on Cora's face.  As a curious Momma, I have to ask!  Before I can get the words out, she tells me she absolutely loves that song.  Cora proceeds to tell me the song is her voice!  She continues by informing me that she sees herself as that small boat in the ocean of life.  That she feels she isn't heard often, and she doesn't speak up much.  However she isn't ready to give up on life!  She isn't ready give up on the notion that there are many other kids with heart surgery who will follow behind her in school.  She wants to help make the path a little easier for the next congenital heart defect kid.

     This song is her anthem!  Cora says it is her "fight song, take back my life song, prove I'm alright song." She says she feels strong when she hears it.  She doesn't want to give up, or care what others say, because she's "still got a lot of fight left in me."  She isn't going to think about the end, she is going to think about the now!  Clearly there were no words that I could say.  At the risk of being a crying mess, and unable to see the road to drive, I simply smiled and nodded.

     So thank you Rachel Platten.  Thank you for your song Fight Song.  Thank you for empowering my daughter through your words. Thank you for breathing courage, hope, and inspiration into my CHD daughter!  Silly as it may sound, any little bit of encouragement she can receive to lift her spirits, and ignite a flame within her, deserves a special thank you!  If that has to come from a song, I'm so grateful it's a song like this.  I'm blessed that God guided my daughters ears to this song, her entyrruptation of the words empowered her, and that she now has some new found strength, and unconditional love,  to continue to try to make a difference in school for other CHD children who may follow!

Blessings Until Next Time! 

Drena

Outfit Of Strength!

   Being a CHD Momma seems to add pressure undiscovered daily!  Everyday I try to put on that outfit of strength.  I walk out my door ready to greet the world in my wrinkle free armor of strength, however within seconds....I feel like I've been stripped of my strength and invaded by the harshness of life!  I'm now standing at the door completely exposed to the world.  I'm fighting a battle every second of my day, unarmed and falling to pieces.

     It seems to begin early in the morning with Cora forgetting to take her medicine.  Reminding her constantly makes me feel like a nag. The kind reminders have now become loud lectures!  We are steps from being out the door and the discovery that she still didn't take her medication is realized.  That sets the dominos falling!  Now a homework assignment is just remembered and, of course, incomplete.  Of course, then it snowballs into the discovery that the lunch box was left on the kitchen table, not once but twice, and we have to beat feet back into the house.  This then triggers the, I need something else but it can't be found.  Then the the icing on my already crumbling cake.  An anxiety attack within Cora starts.  It's like the boogeyman is lurking around each corner, waiting for me!  He knows he can instill fear, and I can feel him trying to break me down.  He's prowling around trying to see how far he can push me until I break.  Quicker than a blink of an eye, reality hits, BOOM!  

     Now the stress of juggling everything is in full swing.  I must keep everything flowing so we don't run late for school.   I have to work with Cora during her anxiety attack, get the lunchbox from inside, keep each daughter moving forward, and somehow find a way to get her assignment completed within the next 27 minutes.  My armor of strength has disintegrated, and I'm barely hanging on!  The worst part, it's only 7am.

    I wish I could say everyday doesn't go this way, however that would be a lie!  Some days are far worse than others, but everyday is a struggle.  Everyday that strength of armor gets ripped, and I am beaten and worn down by the world.  Many nights I pray for rejuvenation and healing of my strength.  I beg for better ways to improve our mornings, and give praise that I seem to juggle it all and make it through.

  I get that everyone has their life's roller coasters rides, but lately I feel like I live on one.  Every time the ride stops the bar doesn't move and....I  simply can't step off the ride.  Quicker than a blink of an eye, reality hits again, BOOM!

     Motherhood is challenging yet reward within itself, but honestly there have been days that no matter how many prayers I pray, no matter how many self pick me up talks I have to do during my day, there are times I end my day deflated and beaten.  Despite all this there is still a silver lining for me!  God wakes me the next morning for another chance to be better, in everything, than I was the day before!  He breathes new hope in me, and believes in me!  So I shall rise tomorrow, wearing my armor of strength and see what the world awaits for me!

Blessings Until Next Time!

Drena

     

Finding My Voice!

     Writing is so very important to me. It is my voice! It is the one place I can go to express my everything that vocally I fail at.  I have been very timid for years about sharing my feelings through words.  I have always second guessed my writing ability, terrified to expose myself, fearing criticism and shame.  Then God gave me Cora!  He began preparing me for being a special needs Mom, and along the way he shared the talent he instilled in me.  Crazy I know.....but true!

     Writing this book about Cora and our journey has been torturous, scary, fulfilling, rewarding, and exhausting.  Unburying years of regressed emotions has been liberating, as well as horrifying.

This book has been a 14 year journey that started out through journaling.  This journey has given me hope, strength, confidence, and......a voice!  I have begun to see God's work within me, and I realize there is no need to fear!  I now know the talent God gave me is writing!  I know this because when I write I feel my soul shine, and a happiness that's unexplainable overcomes me!  To see words creating sentences, that creates a story, that educates some, and helps others escape, it is very liberating.  It is sad to admit that I've listened more to the Neh Sayers than God all these years. Discovering this talent and knowing what I write could educate some, bring comfort to another, or answer a single question, brings me peace.

     

I'm so proud to announce that I am in the finishing stages of my first book about Cora, and our families Congenital Heart Defect (CHD) journey.  I have battled 14 years of doubt, confusion, sadness, and pure fear!  But.......over those years, God has been molding me, my writing, and my voice!  I am still learning to trust when I can't see, learning to block out the negative noise of others, and listen to the inner voice God instilled in me.  I am slowly releasing my grip to allow God to guide and protect me!  In a way I am taking a giant leap of faith.  Fearful as I may be not following Gods plan for me would be denying Gods gift, and then I just wouldn't be who God has planned me to become!  So..I sincerely hope that each of you will leap with me and read my book upon completion!  It educates, and reveals so much more than one would ever expect!  

Blessings Until Next Time!

Drena