Life has a funny way of working things out. Things you never thought you would do or say often come to fruition later on in life. So ironic! I never cease to be amazed at how far I have come, ahem, or rather how much I have changed.
I never wanted to get married right out of college. Ha! Scott and I graduated and got married the very same month at the young age of 23.
I said I would never drive a minivan and be “that mom.” Ha-ha! Never say never. And by the way, I do love my minivan.
When we were going through the adoption process, our family felt strongly that we were not equipped to deal with a child who had a significant lifelong intellectual disability. And yet God gave us Luke!
Raise your hand if you hate being at the center of controversy and you avoid confrontation like the plague? This is sooooo me. And yet here we are, with a child who is deaf, who wears cochlear implants, who is nonverbal, and uses sign language. When we first brought Luke home, we received so much grief from others on both sides of the argument over the decision to give him the gift of hearing. Why, oh why, do people have to be so divided? Are we not his parents? Is it not our decision to make? EVERY person’s story is different. One size doesn’t fit all. Let me assure you that we have Luke’s best interests at heart.
You see where I’m getting at don’t you?
Life is ever changing. The process of learning and growing never ends until you take your last breath on this earth.
Let’s talk about advocacy for a child who had multiple specials needs. School issues, medical insurance issues, provider issues, communication issues, therapy issues, childcare issues, lack of resources available. Not to mention there is NEVER enough time or money!
I can tell you from experience, that when a child receives a diagnosis of the big A word (AUTISM), parents feel anxious and uncertain. The magnitude of the situation weighs so heavy. Too many unknowns to wrap one’s mind around. Almost immediately, parents move into the research and learning phase. So overwhelmed with all of the information and being inundated by differing opinions of various treatments available, parents often follow the advice of their beloved pediatrician. Traditional medicine compartmentalizes each symptom. The resulting norm is to send the child to multiple, different therapies to help the child narrow the gap between “normal” development and their deficit. The traditional medical community does not look at healing the root cause but at treating the symptoms.
After a while, we figured things out a bit. We found our way to navigate this world of special needs. Luke made some dietary changes that helped with behavior and we continued his therapies. In came our breath of fresh air, Kelly, and Luke began to blossom! He made remarkable progress in all areas over the span of 3 years. Although it has always been a dance of one step forward, two steps back—we had come so far.
Everything came to a screeching halt in March 2018. Overnight, Luke developed vocal and physical tics, crying outbursts/anger episodes, changes in handwriting, and light sensitivity. We learned that Luke developed PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). Since then, he has lost about 3 years of gains, especially in the areas of behavior.
Isn’t it ironic that our longtime pediatrician who was the first one to diagnose Luke with PANDAS turned her back on us and couldn’t/wouldn’t try to help us? And that this disorder is controversial? And that our large, local pediatric healthcare system as well as an even larger one further east in the state doesn’t support or acknowledge this diagnosis? Why is it so hard to recognize PANDAS as a medical condition?
Thankfully, we have a new local pediatrician who is supportive. We have traveled to SC for medical appointments and we will be in Ohio later this month to see a specialist. All out of pocket. Traditional medicine has failed my son. Yes, we have tried the medication route. The waitlist for Applied Behavior Analysis Therapy is around a year. We have moved to an even cleaner diet and biomedical/functional medicine approach. We won’t quit on our son-we can’t! What would you do?
I have learned so much over the last 10 months. My perspective has broadened. I now see how naïve and close-minded I was on certain things prior to this journey. I am thankful for those dear ones who have helped me navigate this new world and not feel so alone. And so with that, I humbly encourage each one of you to learn, grow, and be open to new thoughts and possibilities.
