Tiny VICTORIES!

     Advocating for your child can take a lot out of you as a parent.  It is an endless, many times, thankless job.  Seems like the only reward I get is an upset teenager, who thinks I'm always in her business.  To her, I think she thinks I'm airing our dirty laundry for the world to read.  Yep, it doesn't matter how blue in the face I get, explaining I'm sharing our story in hopes to help another.  It just doesn't fly.  She still gets upset with me.

     I must admit I have days of defeat!  Days when I step back and wonder, is all this really making a difference?  Am I truly reaching anyone?  Then, I have a moment like I had the other morning.  

     Sitting in an IEP meeting on full alert.  My advocating uniform is on! Praying I'm heard!  Hoping and needing this small group to truly see my daughter. I take a deep breath!  Needing these teachers to put aside their teacher hats, the rule book attitudes, and, see my daughter!  A teenage girl fighting to be enough in everything!  Surprisingly......that is just what I received!

    A warm cozy setting, light friendly conversation, and a deep honest regard for making this freshman year for Cora, a wonderful one!  I felt today was a genuine breakthrough for me.  These group of professionals asked questions no other teachers have ever asked.  They wanted to know Cora as a person.  They brought up ideas I never thought about, and showed me we were a team!  The past years have been me, the parent, taking on the critically negative professionals.  It has been a struggle to hold my ground, and not allow them to push Cora's needs aside, because she doesn't fit the "normal" IEP mold.

     Today I leave this meeting with a tiny victory!  I feel like this group of professionals get Cora. That they CAN help her to succeed now and beyond. This is the first group who has thought about her life after school.  Really, this is the first time anyone acknowledged that they need to begin preparing her for life after graduation, whatever that path may be!  As a parent doing my darnedest to provide as normal a life for Cora, I'm most grateful.  The teenage years have been a challenge this far, but adulthood is going to be so much more difficult!  Equipping my CHD daughter sooner than later, may make the extremely bumpy road ahead a little bit more bearable!

Blessings Until Next Time!

Drena

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!