My favorite day of the week is turning into Wednesday. After work and school, Roger and I listen to music for about 3-4 hours. I let him choose what albums he wants to play. He has even learned how to put the vinyl on and use a manual record player.
He has such eclectic taste with everything from The Beatles to Anthrax to DEVO. Yesterday, we listened to Motörhead, Iggy and the Stooges, and U2. He knows so much more about the bands than I do and always teaches me something new.
I am so curious what type of teenager he will be. No, I do not want to speed up time. I wonder if he will find his people in middle school or if it will take til high school. He has friends his age but none share his musical tastes. I guess Frank Zappa is not cool in the circles of 10 year olds!
Roger is just so amazing and I’m so lucky to have this special time with him each Wednesday.
I figured since I’ve been absent from posting the last 3 weeks, I’d post separate entries regarding what’s been up in our world.
One of the most frustrating issues has been a denial of insurance for ABA services due to “not being medically necessary” for our 5 year old son with autism. We buy our son his own insurance policy just for ABA services since self-funded employer plans can opt out of providing it.
Anybody with an inkling of autism knowledge should be aware that the only proven therapy to help is applied behavioral analysis (ABA). Roger began Early Intervention in California at the age of 18 months, prior to his diagnosis, and they utilized the Denver Model that includes ABA. He was in that program until we moved to Texas in October of 2013.
The following year we were not aware of child-only policies, so he only attended PPCD 3 hours a day, had OT 1-2 times a week and Speech once a week. He did progress a little bit but nothing like he has in 2015 while attending the Easter Seals’ preschool with a BCBA.
Of course, I received the letter on a Friday night and began freaking out. Saturday we had plans so I could only mentally obsess. Sunday was the day I dedicated to compiling my appeal. The package that I sent in a Priority Medium Flat Rate Box consisted of over 250 pages of evaluations/observations/ADOS/IEPs. After I finished that task, I wrote letters to Easter Seals’, our psychologist, and pediatrician to fax their letters separately.
I am relieved that it is off in the mail before the holidays! One less thing to think about until I follow up next week.
I don’t know what’s being pumped into our house today but we are all in crappy moods. Roger is whining over EVERYTHING and I’m extremely irritable which is a great combination as his whining is pushing me over the edge. I try to put on a smile and act cheery but then I get in a funk again.
I was hoping that writing may give me a revelation or turn my mood around. However, I realize now that I no longer feel like writing.
Life with bipolar.
My son is such a great kid. He’s not aggressive like most boys his age (he’s 5). He is super affectionate and we could all learn from his determination.
Tuesday Roger had to have an endoscopy and 24 hour esophageal nasal tube test. I tried prepping him the night before on what to expect and showed him pictures of the nasal tube. We also kept repeating the food and drink cut off times. He nodded. He was completely disinterested.
The next morning he (we) woke nice and early. He asked for his morning snacks and water. We told him no to food and that he had 30 minutes left to drink water. We set a timer. He does well with countdowns.
The drive to the hospital was a bit lengthy due to traffic and the maps getting confused and rerouting. My husband dropped us off out front. Roger was hoping for a play area but there was none. Things moved very quickly and we were at the desk going over a ton of forms needing signatures. Roger looked at me and said, “I’m sad”. Up until that point, he was completely non-chalant. I told him mommy and daddy were going back with him.
Roger did well getting his cape on and getting his vitals taken. Usually his can never be read due to his non-stop movement. As things tend to go, our wait before getting his “silly” juice/sleepy medicine was nearly 2 hours. Roger was a trooper playing on his iPad and watching Home on their tv. The girl across from our “room” continually screamed “I’m scared!” If I were in Roger’s shoes that would’ve made me a wreck. He seemed not at all bothered (thank you, autism). Finally, he received his “juice” and started quieting down and got sleepy. They wheeled him back to the OR about 30 minutes later and he did not get upset at all (inside I was a mess).
The procedures did not take long, all went well, and we were allowed to go to the recovery room. Roger’s eyes were full of tears. He kept repeating that he wanted the tube removed. It was a circular cycle of him asking, him being denied, and him spiraling into a series of coughing that even worried the nurses. During this time, the tube also had to be moved down his esophagus further. It was all so heart-wrenching. He also needed arm casts to prevent him from touching the tube. We tried to have them off a few times but he immediately would grab at the tube.
The tube, the arm restraints, and the awful food schedule of him only being able to eat/drink every 4 hours with nothing in between was what we left the hospital with. We had a few bad moments during the day but he was so unbelievably good. I would not have been that calm and easy-going.
My son is one remarkable little boy.
To begin with let me acknowledge that I am grateful for the Affordable Care Act. I am able to get ABA services for my son because of it. Employers can opt out of that coverage and most due (unless the founder/CEO/other bigwig is personally affected by it). Also, Roger will not be denied medical and behavioral services based on the pre existing condition of autism.
2015 was our first year using an ACA plan for Roger. We reached the out of pocket maximum in less than two months. He was able to attend the Easter Seals preschool. Without the insurance that would not have been possible since it costs $4900 a month ($58,800 a year). He is excelling and it has been a year of unimaginable growth. There have been some pitfalls with reviews of medical necessity, but, overall, an easy year.
Next year the medical doctor pool is dwindling for the ACA plans. Roger will still be able to have his ABA but speech, occupational therapy, and physical therapy options will be close to none as well as pediatrician and specialist options. It seems our only solution will be to place Roger both on his own ACA plan and on my employer plan. In addition to the increased costs of monthly premiums, we will still be reaching his ACA out of pocket maximum without it benefitting the cost of his other therapies and medical needs. Those will be on a plan with it’s separate deductible and out of pocket maximum.
We will take on the extra burden of cost, but what happens to those who cannot?
I don’t know about the rest of the world but, for me, one day can feel like several disjointed days. Maybe it is because it begins so early and chaotically. Maybe because I have to make shifts between my jobs. Maybe because we are overscheduled. Maybe because I am exhausted from a lack of sleep and too many things on my mind.
Whatever the reason, today feels like I’m on part 2 right now. This morning was a lengthy parent-teacher meeting. They are very helpful, listen attentively and have great input. After the meeting, I decided to make a doctor’s appointment for Roger. He has had a cough for about a week that is so terrible at night that we are all sleeping horribly. I don’t think he was sick, but I wanted to double-check since he is scheduled for an endoscopy next week. I called from the school parking lot and scheduled a 10:45 appt. It was 9:15 in Grapevine which is roughly 30-40 minutes from our house in Highland Village. Instead of pulling him that early, I got some coffee downtown and picked him up a little after 10. The doctor reassured he is all good to go with the endoscopy and prescribed a nasal allergy medicine. She believes his coughing may be so severe due to his reflux issues. A quick run to Five Below for a transformer for being such a good boy (his words) and we headed home. Thankfully, my parents were able to watch him this afternoon, so I could enter part two of my day.
We arrived home minutes before my folks arrived. I was trying to bring all of our junk in from the car, get Snuffles outside to go potty, open Roger’s new toys, get a cup of coffee, take out the smelly trash, start laundry, etc. My parents always get to see me under a mountain of stress. A mountain of stress from just doing normal chores. However, I try to do all these things in ten minutes or less. I get frazzled, inpatient, snappy, pissed off, and super sensitive. Getting into my work flow actually calms me and gets me back into my routine. Clearly my Aspergers loves routines and gets upset when my routine is upset (as it was this morning).
Part three of my day will occur after my work shift. It usually consists of picking up Roger, going to therapy, getting his dinner ready and the bedtime/bathtime routine, and a quick interaction with my husband. Tonight, my parents are taking him to therapy (so I can make up work hours) and will be making dinner at their house.
I know I am lucky to have my parents available….and, yes, I did apologize for my earlier demeanor with them!