HOW TO EAT A WHALE

One mother's attempt to advocate for her special needs child

 
 
 

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  • Amber Drea

Hurry Up And Wait


Just a few of the forms I've had to fill out in the past month

Nothing helps you understand how screwed up our country’s healthcare system is like having a child with chronic medical conditions. If you’re not dealing with inadequate receptionists, incompetent lab technicians, inefficient pharmacies, inscrutable doctors and incomprehensible insurance policies, then you’re navigating the bureaucratic nightmare of free, government-funded social services like Early Intervention, which seem designed to dissuade people from bothering with them. In order to even start communicating with a new caseworker, you need to sign two separate forms—one for texting and one for email. In the two and a half years since my son, Stanley, was diagnosed with the rare liver disorder biliary atresia at 9 weeks old, I’ve probably filled out more paperwork than I completed in the previous four decades of my life. You’d think I’d have the hang of it by now, but things have only gotten more complicated.


Let me give you a little background. In addition to undergoing his first liver surgery at 10 weeks old, a liver transplant at 6 months old and a liver biopsy at 10 months old, Stanley has had cataracts removed from both eyes, as well as strabismus surgery to correct the alignment, and he must wear very thick glasses until he’s able to have artificial lenses implanted. During his first year of life, he spent 67 days in the hospital and received most of his nutrition through a nasogastric feeding tube. Due to these physical limitations, Stanley exhibited significant developmental delays and began working with a team of therapists through New York State’s Early Intervention program to help him reach basic milestones. After two years, I started to suspect that something else was going on with him because he wasn’t progressing as quickly as other transplant children I knew. He didn’t walk or talk or eat foods like a normal toddler would. He didn’t play with his toys or with other kids the way a normal toddler would. He hated specific abrasive sounds and certain strange textures. So I voiced my concerns to the Early Intervention service coordinator, who told me that we must request a psychological evaluation and that the special instructor would need to write a justification letter. After nearly two months of waiting, we received word that the request was denied.


Frustrated, I took matters into my own hands and called the behavioral specialist recommended by our pediatrician to make an appointment. I’d tried to schedule one with her when Stanley was around 18 months old, but she had been completely booked up through the end of the year. This time, however, I was able to get in—four months later. August 15th, 2018, finally rolled around, and the doctor diagnosed Stanley with mild autism spectrum disorder (ASD). I’d considered the possibility, so I was mentally prepared for the news. In fact, I felt relieved. Now that we understood why Stanley behaves the way he does, we could actually help him. It was the not knowing that had been driving me crazy. How can you fix something if you don’t even know what’s wrong?


Of course, autism comes with a whole new set of challenges. Despite receiving a handwritten prescription from the doctor for 25 hours per week of applied behavioral analysis (ABA), the universally accepted treatment for ASD, the Early Intervention program requires that he undergo a psychological evaluation (yeah, that thing I requested nine months ago). To make matters worse, we got assigned to a new service coordinator (our fourth in two years!), who doesn’t even live in the city and doesn’t seem to be much of a problem solver. After two weeks of patiently waiting for her to find an agency that could do the evaluation (while checking in every day because that’s the only way to make sure no one’s dropping any balls), I once again took matters into my own hands and Googled “early intervention psychological evaluation Brooklyn.” Lo and behold, the first agency on the list was located within walking distance of my apartment and had a doctor who could do the psychological. It makes you wonder what the city is actually paying these people to do. Now we’re just waiting for the EIOD (Early Intervention Official Designee) to approve the request. Literally, all she needs to do is sign her name on a piece of paper. Fingers crossed she’ll get to it by the end of the week!

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