Mighty and the Bean

My son Mark was diagnosed with autism on January 27th, 2015. We were applauded for recognizing the signs and seeking an early assessment. The developmental pediatrician at Kennedy Krieger Institute in Baltimore, MD gave us a list of therapies and interventions that have been proven effective in helping children with autism. I quickly began searching for reputable providers to begin services and as part of that research I called our insurance company to make sure that Mark was covered. My husband and I both worked for employers that provided health insurance and our health care was provided through my employer. I called the number on the back of our insurance card and after a 30 minute phone call, I felt like the wind had been knocked out of me. They informed me that I work for an employer with a self-funded plan. They did not provide habilitative coverage. I learned that when a child doesn’t have skills to begin with, such as the case with my son, the services needed are not rehabilitative, they are instead habilitative. These services are likely not covered because they are more expensive and long lasting, costing the company much more money. Because my employer has a plan that they self-fund, they are not subject to the state of Maryland mandate that requires coverage of habilitative services. This meant that in home therapy and intensive speech therapy, both of which were highly recommended for Mark, were off the table.

I then learned that in our state, there’s an autism waiver that would pay for these services but there’s a nine-year long waiting list. Mark would be 11 before he would potentially benefit. And our local school system has a parent training model where they only provide limited visits, once or twice per month with the intention of training parents how to provide intervention for their own children.

Kennedy Krieger’s billing office gave me a packet of information that has helped other parents lobby to have their children’s services covered by their employers. Immediately I contacted my Human Resources department who put me in touch with our insurance representative. He confirmed that there was no budging on the habilitative service coverage and directed me back to HR. I called and emailed until finally they set up a call with the broker of their plan and had a closed meeting, for which I was not permitted to attend. During this call, it was determined that no changes were to be made, regardless of my appeal.

Head spinning, I began desperately reaching out to my friends with children on the autism spectrum. I contacted a veteran autism mother who very matter of factly told me, “this is what you are going to do, you’re going to purchase a plan through Obamacare”. I knew nothing about government sponsored healthcare as I was always employed and covered by my employer’s plan. I didn’t understand the market or the exchange, or anything about how it worked but all of that changed when this became my only viable option to make sure that my son’s therapy was covered.

After several hours of phone calls with representatives through the Maryland Healthcare Exchange, as well as the assistance from our local health department and a local insurance broker, they were able to help me make my case that my employer’s plan was not providing adequate coverage. They allowed me to shop the plans on the exchange outside of the open enrollment period. I purchased the most comprehensive, and expensive plan I could find that would cover all of the speech, occupational and physical therapy he needed. His services started soon after I received the insurance card, which was about five months from the time he was diagnosed.

Since this time, Mark has made progress, learning to walk, feed himself, make eye contact, point, request items with gesturing, match colors, shapes, recognize and distinguish family member’s photos and follow basic instructions. At the time of his diagnosis, he spent 80% of his time spinning in circles on the floor, avoiding eye contact, and staring at flashing lights.

Mark is far from neurotypical, but his behavior has improved and he has been able to gain functional skills. The pressure that was lifted when therapists began coming into our home to provide services was priceless. I could focus on being his mother, and caring for both of my children, instead of being the therapist I knew he needed and we couldn’t afford.

We didn’t qualify for government assistance or receive help to pay for the high premium, but that was ok with me because I knew that there was no way we could have afforded the care he needed without insurance. Without this coverage, the services my son receives would cost us $10,000 per month.

I wanted to share our story because I have read some rather hurtful and inaccurate statements and comments about the Affordable Care Act and those that it insures. I am not mooching off of the system. I went to college, graduate school and have been employed my entire working life. If the Affordable Care Act was not an option for us, I would have been failed by the system that allows a large employer to deny coverage for an expensive diagnosis. Receiving the news that our child has autism was painful enough, but the thought of not being able to get him the care he needs to be as functional as possible is excruciating.  

Please share our story. Contact your local representatives and demand that they reconsider completely dismantling the Affordable Care Act without at least considering the millions of people that have benefited from its existence. This is only one story, but I’m sure there are others out there like us.

My sister stopped by on New Year’s Eve with homemade pretzels, a Snap Chat tutorial for her old lady sister and some passing comments about 2016, looking forward to 2017 being better.

I thought back over my year and whether I would sum it up as good or bad. Immediately I thought about my mom’s cancer treatments, the summer of Mark’s broken arm and his new intense fear of doctors, and the loss of the two children with SCN2a. Realities of my fears; potentially losing my mom, the increasing difficulty of parenting a child with special needs, and the ultimate fear of my son’s life being shortened. Because of it, I’ve acquired more gray hair, my worry lines have deepened and I’ve gained more of a seriousness to my demeanor.

As Mark was curled up in my desk chair watching slideshows of photos on my computer this afternoon I caught a glimpse of a picture from a few years ago that lives in the “before” category, a separate space that I’ve mentally designated to contain the memories of a time when I didn’t know what was coming, my life wasn’t turned upside down and I didn’t wake up in the middle of the night alert, mind racing, very aware of all that weighs on me. In this photo, I looked healthy and clearly less stressed, because I didn’t know then what I know now. The little boy I was holding was missing milestones and it wasn’t just because he was a boy, and boys develop at a slower pace.  I often yearn to go back to a simpler time, when my worries were so much less significant; so much so that I can’t even remember what consumed my concern.

And now my fears are in layers and they come in waves. I lay awake at night researching schools on my phone, terrified that Mark will attend a school where he’s ostracized, secluded and rejected. I imagine having to sell the house we built as our forever home in pursuit of better education and services. I even imagine the possibility of homeschooling, something I never considered. I lose track of him for a moment in our house and my heart skips a literal beat as I entertain the possibility that he may have figured out how to open an exterior door. And on mornings where he sleeps later, I worry that I will find him seizing in his room. The failed attempts at learning, the loss of language, and dreadfully slow progress makes me take a deep breath that I wish would lighten the weight I feel but doesn’t. The heaviness of discouragement coupled with these fears leaves me feeling physically drained, emotionally tapped and on edge.

I constantly reevaluate, rethink, and criticize what I’m doing, and what I’m not doing. I think about Mark’s team of doctors, and whether I should I try a new one. Whether to seek out that quarterback that I’ve always wanted, someone to coordinate his care, to think about him as a whole person, rather than seeing his body systems in isolation, to help to reevaluate therapeutic approaches and diet, and for goodness sake, know something about SCN2A, and take the pressure off of me to unravel the tangles. I constantly second guess my choice to send him to a speech program that requires a three hour round trip four days per week. I wish for time to reorganize and renovate my basement to be the sensory play gym that I know he needs. I beat myself up over the time I don’t spend trialing new foods or not making everything from scratch, my lack of follow through with using his communication binder and the things I let slip through the cracks, like getting his new insurance card to the private therapy company in a timely manner.

2015 was the year of scrambling. I spent it reading every book on autism I could get my hands on, trying every therapy within the realm of possibility that looked remotely promising and talking to every parent I knew with a child on the spectrum, and at the end of the year, connecting with parents with children with his specific SCN2a mutation. I fought hard that year for his insurance, for his therapy and for a support network that could help us manage the chaos. 2016 was the year of seeing what I fought so hard for fall into place and anxiously awaiting the resulting progress. The year has concluded with the sobering reality that his diet, supplements, therapy and my efforts to move him forward aren’t producing the results that I had anticipated. He absolutely has made progress, but it’s hard to decipher what to attribute it to and it’s even more difficult to keep a faithful outlook when the progress he does make is gone quicker than it came. 

So now in 2017 I find myself regrouping and taking stock of where we are, and digging deeper to see if I can work smarter and not harder. Despite feeling beat down by the never ending battles I know that Mark deserves the best, my best. He deserves a mom who will keep an eye on the ball, not give up on him, and fight with every fiber of my being for everything he needs to be safe and supported. And I will shoot for the moon, I will work hard to learn even more about SCN2A, I will work to double our profit at this year’s color run, and we will take one step closer to a cure.  And so perhaps these are my resolutions for the new year.

This past year may have aged me a bit, but may I gain wisdom from the mistakes, rejoice in even the smallest of victories, and may the fears that exist in my world serve only to fuel my perseverance and determination. We may lose words, the milestones may never come, but I resolve to keep my chin up and my outlook bright, because just look at that face. His smile says it all, without the words.