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!

Lessons From Heart Camp!

     My reunion with Cora on Friday wasn't how I imagined in my head!  Don't get me wrong it was good but.....it wasn't the yelling of my name, running to me so I could swoop her up in my arms hugging and kissing her.  Instead.......it was a quite "Hi Mom.", and is it time to leave already?  I did however get a hug and a joyous smile from her. 

     On our travels home Cora began telling me all about her week.  Something was different this year....I looked at her no longer seeing the little camp girl....I saw a young lady sitting next to me wanting to share her week with me!  As she began to talk she seemed so grown up.  How could I have dropped off my little 13 year old daughter on Sunday, to come pick up a young lady on Friday?

     She began by stating, "Mom I learned a lot at camp this week." She proceeded to inform me that she learned about miracles!  She felt that the little camper girl that passed out and went into cardiac arrest, would die.  She said she openly cried and prayed for her.  Cora was amazed that within 24 hours the little gal was sitting in bed Skyping with her and her fellow campers.  Cora simply said it was a miracle.  "They do exist Mom!"

  She continued to tell me her second lesson learned.  She went into a lengthly explanation about a difficult counselor at the camp, and how she had a hard time of it.  Then she fell silent.  I thought for sure she began crying.....leaning to the side of the window I heard her take a deep breathe.  She perked up and spoke once again...."You know Mom I didn't like this counselor's attitude, or the way she spoke to me but....she taught me the most.  Don't open your mouth if you are going to cut someone down...she hurt my feelings all week, but, I do that too."  She went on to tell me that this counselor was very harsh and rude.  This counselor's behavior finally got to Cora, making her cry while she was at camp.  But she said she's done the same things to friends and especially her sisters.  She concluded with "That must be what God wanted.  Mom you've said it and I ignored it.  So guess God had to do it."

     Now I know it's only been a few days but Cora has retracted quite a bit that has come out of her mouth, and I have seen her cover her mouth a few times in attempts to stifle the mean.  This is new chartered territory for her...being so blunt has always been Cora.....no filter and the lack of recognition  of her statements.  BUT...these past few days I have seen God's work within her.  She has become aware of those words and the impact they cause.  I know she'll stumble a lot....we all do....but seeing the acknowledgement of others feelings, and working to do better is all I can continue to pray for!

     Who knew you could learn so many life lessons at Heart Camp?!  I am so grateful for The Lord's work within my daughter this past week.  I continue to be amazed at the blessings he grants each of us, and our family as a whole!  As for our home, we WILL continue to serve The Lord!

Blessings until next time.

Drena