So many have reached out to us about Thatcher. It has been hard to write this post because we honestly have no answers.
A few weeks ago we began to feel as though his behavior was regressing. It seemed as though all the strides we had made over the past year began to disappear. He began experiencing what the doctors called “headaches”. He has had episodes in the past where he screams, cries, and lays in the floor covering his ears. They are horrible. When this happens he can’t hear us and he won’t let us touch him. It is indescribably heartbreaking to watch your child scream and cry in pain and not be able to touch or hold him.
I had assumed that these episodes were due to the SPD diagnosis and that something had just pushed him too far. Then they started getting more frequent and one night he woke up in the middle of the night doing it. It took me a long time to get him calmed down and it terrified us. Off to the ER we went. Honestly, by then, he was acting like a normal 4-year-old and our concerns were dismissed until they consulted with CHOA. They recommended a neurological consult and an MRI.
It has felt as though we have just been sent to doctor after doctor with no answers. It is frustrating and has left us in tears more than once.
Our pediatrician has been amazing though. Constantly calling and checking to make sure that he is ok and that we don’t need anything. The pediatrician and I both believe that he may possibly have ADHD or High Functioning Autism but that diagnosis is left to another doctor and another round of evaluations. The idea of a diagnosis is heartbreaking. The idea that someone would define him by a “label” causes many sleepless nights. We never want to label our kids or have someone not see how amazing he is because of it. That is our fear. I see the sweet, empathetic and smart child but what will others see if they hear a diagnosis? Will they look past the label and see who he really is? What will happen when he starts school and teachers hear that diagnosis? Will he be dismissed and just shuffled through if he doesn’t learn the same way or needs extra accommodations? So many fears.
The best advice that I have been given is to just focus on one day at a time. So that is what we are doing our best to achieve. We focus on today and today was a good day.
It is a journey, and we have been blessed to have so many come alongside us and share their journeys and offer their advice and support.
Right now we are waiting on an Evaluation and hoping he will get admitted to the Preschool Special Needs Program. We also are following up with the neurologist and he will be getting an MRI to make sure we are not missing something. It has been a hard few weeks and we have appreciated more than anyone can know all the prayers and support.