Wednesday, March 22, 2017

Why I Fight So Hard for My Special Needs Child

We have to start at the beginning to answer that. 

A couple days after my little Parker was born early by emergency C-section and was fighting for his life in the NICU, the doctor sat down with us in the hospital room while we sat nearby watching the ventilator help Parker to breathe.  The doctor started to cry as he gave us the diagnosis.   You know, the diagnosis that your child has something extremely bad that no one else in the whole world has and we don’t know what that will mean for him but it’s probably in no way good.   Yeah, that one.

Several weeks later, Parker had made tremendous progress and was breathing on his own and learning to eat orally.  He was fighting so hard and I was extremely proud of him and how far he had come.   We sat down again with that same doctor and he told us if we chose to withhold treatments for Parker at any time that was understandable and OK and there was no right or wrong answer.  What?!?!  HELL NO!  If my son was willing to fight to stay alive and do his part then I sure as heck was going to fight for him too.  And I vowed to do just that and I’ve been fighting for him ever since.    
It seems the fight is constant and never ending.   I’ve had to fight for knowledge because no one was able to tell me about Parker’s condition so I had to educate myself and then in turn educate his doctors.   I’ve had to fight for the best medical care, the best doctors, the best treatments and the best medicines.  I’ve had to get second, third and even fourth opinions on surgeries that were or weren’t needed.  I’ve had to fight to get people to understand how important it is to use precautions to keep Parker healthy.  I’ve had to fight the insurance companies and various supply providers regularly to get necessary medical supplies and equipment covered (this infuriates me).  I’ve had to fight to get services, supports and therapies for Parker. 
I call and write letters to government officials and agencies when they make decisions that don’t make any logical sense and try to explain things from our point of view.  I’ve had to fight for Parker’s education and make sure he’s getting anything and everything that is available to help him maximize his potential and be all that he can be.  I’ve had to fight for my marriage as this life of ours is stressful and hard and the statistics are super crappy for couples with a high needs child.  I’ve had to fight to make my healthy daughter’s life as normal as possible.  I’ve had to fight to get access for Parker to enjoy things he should get to.  I’ve had to fight to get people to understand Parker’s worth and purpose and help them realize that he deserves this fight!   I’ve had to put my past life on hold and realize my new objective and not give up on Parker or my family.  
Parker is an amazing little guy who has come way further than any of his doctors expected him to and I will try my very best to give him every possibility for the best.  That is what I promised him I’d do when he was fighting for his life as a baby and I’m not going to stop now or settle for mediocre.  
It’s important to realize that my goal is not to be this crazy, annoying, unrealistic Mom.   My goal is to provide the best possible life and opportunities for Parker and my whole family and sometimes it requires this Mama Bear to advocate really hard for her child.  Because, if I don’t…who will?

Wednesday, February 22, 2017

Until We See You Again

These two had a very special bond. They were buddies.
The hospice staff and nursing staff thought Dad was going to pass away days ago and we were told on a few different occasions that this was it and to be prepared. But…Dad kept hanging on. The staff kept saying, “Is there anyone else that your Dad is waiting to say goodbye to?” I had been hesitant to bring Parker in to see Dad since things were going so poorly. I didn’t know how Parker would act or how I would help Parker even say goodbye. But everyone was sure Dad was holding on for someone so today I decided to pull Parker out of school early so he could go visit his Grandpa.
The visit was so special and beautiful. Parker was able to see past how his Grandpa looked or how he was breathing or any of the stuff the rest of us would notice. He looked right at Grandpa, got a big grin on his face and waved “hello” just like he always did when he saw him. Then he started blowing kisses at Grandpa repeatedly. I pushed Parker’s wheelchair up close to the hospital bed and Parker reached out for Grandpa’s hand. He then started very gently rubbing Grandpa’s arm. I helped Parker tell Grandpa Tom that he was there, that he loved him, that he was his special buddy. I told Dad that Parker has had some great moments with his Grandpa and he will always be special to him. Then I told Dad that Parker just wanted his Grandpa to be comfortable and at peace and it was Ok for Grandpa to go to Heaven and be with his Uncle Luke. I told Dad that he could watch over the kids from above and he would have the best seat in the house to watch his grandkids grow up.
I picked up Parker and took him to the other side of the bed and held Parker close to Dad. Parker leaned his head in to lay it on Grandpa’s chest and at that point I lost it. Sure, I was sad. But I was crying because I was witnessing an act of pure, unconditional love. My little boy that is non-verbal was doing everything he could to show his Grandpa just how much he loved him. It was the most beautiful thing.
A little bit later, Parker looked up at his Grandpa Tom and waved “bye-bye”. It was a joyful goodbye like one that says, “Until I see you again”. I tickled Parker to make him giggle and Dad fluttered his eyelids and his eyebrows moved up. This meant the world to me because Dad has been completely unresponsive for a couple of days but it really appeared like he was responding to Parker’s giggle. I held Dad's hand and told him again that it was OK to let go and Parker and I left.
A little over an hour later, I was sitting with John at Dad’s bedside as Dad took his last breath.  I guess he needed to tell his little buddy goodbye.
Thomas W. Dorn
We love you!

Wednesday, February 1, 2017

An Open Letter to the Senate Regarding Betsy DeVos for Education Secretary

Dear Senators,

I wanted to write to you to let you know how deeply concerned I am with the Education Secretary nominee, Betsy DeVos.   First of all, I do not feel she has the experience needed for this position.  She hasn’t been in charge of a large organization, she has never been an educator, she has no personal experience with the public school system and she seems to have a personal agenda.   

The most concerning reason I am personally against Betsy DeVos; however, is her apparent lack of knowledge or expertise in special education services in public school settings.  She didn’t even seem aware of the Individuals with Disabilities Education Act (IDEA) at her confirmation hearing.  IDEA is a crucial and highly important federal law that protects students with disabilities.  I do not feel that civil rights matters such as those protected in IDEA should be left up to the states as she indicated.  I believe all children with special needs no matter where they live should have the “opportunity to receive a free appropriate public education.” 

Let me share why this is of such personal importance to me.   My six-year-old son, Parker, was born with an extremely rare genetic condition called a 6q12-16.1 deletion.  This means he is missing some of the genetic material on his 6th chromosome.  His specific diagnosis is so rare that we know of no one in the entire world with his exact deletion.  This diagnosis has caused numerous medical issues (he has a trach and is tube fed and is followed by over a dozen doctors) and he has significant developmental delays.  He can’t walk independently or talk and he gets sick often.   

Before the implementation of laws like IDEA, my son would not have been able to go to school due to his needs.   However, because of IDEA and the resources and supports provided to special ed students like him, he is able to attend school with his peers and set and achieve goals.  And the wonderful part is, due to the services he gets in school, Parker is making progress and gaining new skill sets and abilities.   I believe all children deserve an opportunity to achieve their highest potential and I think that will be extremely difficult if some of Betsy DeVos’ ideas move forward.    

Besty DeVos is a proponent of vouchers and charter schools.  My fear is that if healthy children use vouchers to go to charter schools or private schools and the funding follows those children (as she has advocated for), then public schools will be left more as institutions for children with disabilities and low income students who are not able to make up the cost differences to attend the other schools.  Public schools will be left with the neediest children but with limited funding and resources.  This will lead to less support and services and lower outcomes which will impact society as a whole.  

Please carefully consider the negative impact Betsy DeVos could have in the position as Education Secretary.  Children like my son deserve a chance at a great education to help them be the best they can be.   I do not feel comfortable leaving my son’s future in the hands of Betsy DeVos.
Best Regards,
Sara Ladd