$490 for Nothing

*disclaimer: as we get further into Jude’s story, all of the specific names of people, neighbors, schools, doctors, etc will be changed for confidentiality*

The days following the meeting with the Montessori preschool were filled with conversation between Joey and I, discussing our next steps. Joey was 100% in disagreement with their assessment and was not in favor of any testing or screening. I plan to, in the future, dedicate an entire post to how men vs. women process a diagnosis in their child, but that’s not important at this juncture.

Joey felt that the Montessori style, with so much freedom and self-regulated learning, was setting Jude up for failure.

“They’re a bunch of dumb hipsters who think if a kid is at all different, or can’t learn their hippy-dippy style, they’re autistic. There is nothing wrong with him! He’s just a boy and needs structure and routine, like me!” I looked at Joey and processed this for a second. I could definitely see his point and agreed about the structure and routine, but I was not convinced that we shouldn’t take their advice.

“Joey, I have been home with him for last 4 months and I’m telling you, something is going on with him. I don’t know what, but it’s more than just “boy”. He is SO DIFFICULT!”

“I do not want him labeled, or anyone making fun of him. Just because someone likes things a certain way, has a few ticks, and hates chaos doesn’t mean they’re autistic!”

This style of debate went on and on for several days in our home. We finally decided (reluctantly) to schedule Jude’s development screening. I received the referral from his pediatrician (who, by the way, at his 18 month check-up, when he failed all the verbal milestones, had told me not to panic, but it was concerning and we needed to keep an eye out for further delays).

The scheduler called me and asked if I had a preference on days or times. Things were so bad at home (and now at school) I told her I’d take the first available. The next available was in 8 months. I almost cried. ARE YOU SERIOUS? What are we supposed to do for 8 months, slowly dying on this wait-list? I called EVERY 2 weeks during that time for a cancellation—it never came.

*this was my first experience with the never-ending world of “wait-lists” for special needs kids. It really is a tragedy that so much time is wasted for these families just waiting. Waiting on insurance, waiting on Medicaid/TEFRA, waiting on therapists to have an opening, waiting on reimbursements, waiting for a spot at a school, waiting on waivers, waiting for the government, etc. (I’m repeating to myself: I will not get political, I will not get political) but it’s MADDENING…

“Beware how you take away HOPE from another human being”- Oliver Wendall Holmes.

This is at the heart of every special needs family (and frankly should be painted on every wall at the insurance company buildings). The reason we fight so hard and allow therapy, insurance, programs, waivers, IEPs, to consume us, is because those things represent HOPE. Hope that our child could still be “normal” and have a fulfilled life. Hope that not all of our parenting dreams will be crushed. Hope that they can one day be in a mainstream classroom, date, go to college, play sports, get married. I know that sounds extreme but its not–I’m sure any other SN mom reading this will attest to the “wheel of fortune” style emotions and thoughts that run through your mind when you’re doing all these tasks.

When you just keep hitting roadblocks and sit on wait-lists the hope is shrinking daily.

**IF you know a family going through this—reach out to them!! Pray with them! Take them a meal, offer to take their child for 2 hours, bring them coffee, send them card, anything.

I decided we couldn’t wait until then to start doing intervention, so I decided to create my OWN plan. I asked his doctor for a referral for speech therapy, since that seemed to be the most dire. I thought, if he could just talk to me, and I could understand him (and vice versa) that it would make everything else so much better.

His doctor referred us to MUSC’s speech-language pathology. I took Jude to the appointment and if there was a gold medal is “bad appointments”—he nailed it. He was awful. He wouldn’t do anything the pathologist would ask or attempt. He just kept rambling lines from movies and being ridiculous. They finally put him in the tall wooden high chair with the Velcro top to get him to focus and he FREAKED OUT.

*This was my first introduction to the special-needs parent phenomenon of “thankful for awful appointments”. I know it sounds crazy, but when you have a child with special needs, and you finally get these coveted appointments and then they don’t act or respond like their “normal at-home self” it’s INSANELY frustrating. The therapists and doctors just stare at you like “what you wrote in the evaluation doesn’t match what we’re seeing” and they send you on your way with no services or help (and a bill).
You can handle the humiliation of the appointment, because it means your kid is going to get help.

So, I sat there thinking, at least she’s getting a real picture of what it’s like living with him—I started scanning my phone calendar to see which days we should clear for speech therapy.

The therapist rolled her chair over to me, while Jude played in the corner with a fake phone.

“So, after scoring him and going through all my evaluations, he doesn’t qualify for our speech pathology program or services. I am going to recommend that you get a referral for OT instead, because it’s not really his language that’s the main issue.”

(*mental note to myself—adjust my blood pressure meds)

I just sat there staring at her.

WAS SHE IN THE SAME APPOINTMENT AS ME???!!! HOW MUCH WORSE DID IT HAVE TO BE?!?!

“Are you serious? I don’t understand how you could possible deduce that from this appointment?” “Well, he is using a lot of words and phrases. That’s why we use these scoring methods. Based on his scores and feedback, he is saying a lot of phrases and using some words appropriately.”
“Yeah, movie lines, and repeating what we say—he does that constantly—that’s not real speech!!!”

Long story short, we left with no future appointments, no answers, no help. Are you ready for this part?

3 weeks later, I’m opening our mail. I see an envelope from MUSC Speech.

It’s a bill for $490 for the speech screening appointment. Our insurance covered $137 on it, making the actual bill $627.

(*mental note to myself- up the blood pressure meds…again)

I was so angry. No, I was filled with RAGE. $627 for an appointment that literally accomplished NOTHING!!! $627 for a ONE HOUR appointment that yielded no results or helpful information!!!

Sidebar: (after the speech appointment) We had made another appointment with another therapist that his pediatrician recommended, who did cognitive behavioral therapy. And I got another referral for OT (which I had no clue what that was at the time) and were just waiting on his intake appointment ($105 per session, 2x per week, 45 mins from our house).
The cognitive behavioral place was an hour from our house and was $120/per hour.
At this point, I’m on the world’s most expensive wild goose chase trying to figure out what would actually help him.

So, back to my rage with the speech bill. I decided I was going to call the therapist and give it to her!
I left her a voicemail and sent her an email. She called me later that day and apologized that it was so shocking, but she “has nothing to do with rates, insurance or billing. That is set with MUSC and your insurance”…

Pay close attention to the next parts of this story. God is about to show up…

As I was literally getting ready to hang up on her in anger, she said… “I noticed on your intake paperwork that you live on Springbrook Avenue… Do you know Rebecca?” (She said the name of my neighbor, a very sweet woman, who I knew pretty well). I was shocked, because our neighborhood is small and not well-known and is obscure to the rest of the area and nowhere near the speech clinic.

“Yes, I know her. Why?”

“You need to talk to her ASAP. This is what she does. She works with the school district for all the special needs students. She knows everyone and knows the system inside and out. She can help you.”

I couldn’t believe it. 7 months in to this journey, closing in on $3,000 in medical bills for just screenings and initial appointments, and my answer was sitting literally one street over from me.

All of the sudden, even though the $490 bill was annoying, it was for a reason. I would never have known to reach out to Rebecca about this. God used a disastrous appointment, and a therapist I never met, who works 30 mins from my house, to show me where to go next.

I called Rebecca the next day and told her the whole story. She offered to come to my house and observe Jude for a bit. At the visit, she was very clear, she was not a doctor, but I needed to get him scheduled with Child Find right away. (I shared with her how useless BabyNet had been and she explained it was because at that point Jude was nearly 3 and would age out of BN, so they have no incentive to help or schedule him for anything). I had no idea what CF was, and doubtful I ever would have on my own. CF is the next step for getting services for a child, who’s 3 years old, through the public school, at no cost. Rebecca gave me exactly who to call, within the county and what to say. She explained the whole process and the steps to take. “If they say this…. Then ask for this…You have the right as a parent and taxpayer to request….. If the screening results in this…. Ask for this…“ I couldn’t write fast enough.

This was DAY 1 of our path to help Jude.