On occasion, Pink Sweatpants will be posting to my blog when it comes to topics that aren’t related to the GF-CF diet. Since I’m a squirrel, issues that are not food-related are of no interest to me.
Binders, binders, binders. I feel like my whole life is consumed by completing paperwork, faxing paperwork, filing paperwork, requesting paperworking, and organizing paperwork. As Daisy (Celiac Squirrel) has told you, Jack has Down syndrome, autism, ADHD, and Celiac Disease. In addition to those diagnoses, he also has Hashimoto’s thyroiditis and chronic sinus infections. Jack’s case is a complicated one, which just got significantly more complicated when he received a diagnosis of “Autism Spectrum Disorder” this past February. I felt like I was already floundering as a parent when it came to his diagnosis of Down syndrome–he had been seen by the Down Syndrome Program at Children’s Hospital Boston in June 2011 and the physician (Dr. Brian Skotko) had made an enormous list of recommendations for us. Dr. Skotko wanted Jack to have an evaluation by an Occupational Therapist, a Speech Therapist, an Augmentative Communication Specialist, and a Behavioral Specialist. He also wanted Jack to have neck x-rays to check for neck instability (which is more frequently seen in children with Down syndrome), blood work to test for Celiac Disease and thyroid disorders, and a Sleep Study to test for Sleep Apnea. I left that appointment feeing completely shell-shocked. But in hindsight, I realize that up until that point we had merely been trying to COPE with Jack’s Down syndrome; we weren’t doing anything to TREAT it. Yes, he was enrolled in Early Intervention and was receiving unbelievable amounts of therapy from some truly amazing therapists at the Thom Anne Sullivan Center in Lowell. But there were potential medical issues that weren’t being addressed. In my defense, Jack was already suffering from chronic sinus infections by that point and he was sick all . . . the . . . time. Back in 2011, we didn’t realize that his sinus issues wouldn’t be going away. Instead, we were just trying to cope with the sleepless nights, the constant visits to the Pediatrician, and the endless antibiotics without losing our minds. Well, two years and two sinus surgeries later, Jack’s sinus issues are still unresolved.
Jack in January 2011, hospitalized for a sinus infection
Recently, one therapist at Children’s Hospital told me that Dr. Skotko had a reputation for giving parents huge check-lists of appointments they needed to book for their child, and not all of them were always necessary. Well in my opinion, Dr. Skotko has a reputation for being unbelievably awesome, and if he wants to err on the side of caution with his patients, well then that’s the kind of doctor I want for my son! AND as it turns out, Jack needed every . . . single . . . one of those appointments, blood tests, and studies that Dr. Skotko had recommended for him.
Dr. Skotko’s Check-List of Recommendations, June 2011
It took me over a year and a half to actually book Jack for everything Dr. Skotko had recommended. A better parent would’ve had it done in less than 3 months. I guess I just didn’t grasp exactly how profoundly delayed Jack was? I’m really not sure. The only way I can explain it is to say that I went into survival mode. My days were spent dealing with a chronically sick child, my nights were spent awake with a chronically sick child, and I was just plain OVERWHELMED. Each appointment required me to fill out a separate intake form, asking me questions that literally required research on my part. What was Jack’s head circumference at birth? What were Jack’s APGAR Scores at 1 and 5 minutes? I mean, who knows that stuff?! So instead of filling out the intake forms, I tucked them away and I just SURVIVED. And things got worse. Soon Jack graduated out of Early Intervention and started Pre-Kindergarten. He missed unbelievable amounts of school because of his constant sinus infections. Everybody was always so upbeat and positive about all of the progress Jack was making, but the fact was he WASN’T making progress. He wasn’t regressing, but the progress was minimal at best. And his behavior was becoming more of a challenge because he was physically getting bigger, but mentally remaining the same.
Want some proof that Dr. Skotko’s recommendations were all necessary?
1. Jack’s bloodwork revealed that he had a thyroid disorder called Hashimoto’s Thyroiditis. It’s an auto-immune disorder where the thyroid creates antibodies against itself. That test led to an appointment with an Endocrinologist who prescribed Jack a thyroid medication to fix the problem. Check.
2. Jack’s bloodwork also showed that he tested positive for Celiac Disease. So what we thought was gluten-intolerance was actually a disease far more serious than that. Check.
3. Jack’s Sleep Study revealed that, although he didn’t have Sleep Apnea, his abnormal brain waves showed that he was potentially at-risk for a seizure disorder. Those results required a visit to a Neurologist. Thankfully, since Jack has never shown any other signs and symptoms of seizure activity, the conclusion was that Jack’s “abnormal” brain waves were “normal” for him, and unless he started showing signs and symptoms of seizure activity we had nothing to worry about. Check.
4. The results of Jack’s neck x-ray were normal. So was the x-ray unncessary? Nope! Because as it turns out, the results of Jack’s original neck x-ray performed back in 2009 had been misinterpreted and DID in fact show some neck instability. Dr. Skotko was the one who noticed this TWO YEARS after the fact and ordered the follow-up x-ray, which thankfully showed that Jack’s neck instability had resolved on its own as he grew. Check.
5, 6, and 7. In late 2012, I finally got my act together and in a matter of weeks had completed all of the intake forms necessary for Jack to be evaluated for 5. Speech, 6. Occupational Therapy, and 7. Augmentative Communcation. He received all three of those evaluations in early 2013 and is now going to be receiving 2 hours of Speech & Sensory Therapy each week and 2 hours of OT each week AFTER school at The Kioko Center. Check, check, aaaand check.
8. Awful Number 8. Horrible, dreaded Number 8. Of course, we didn’t know it at the time, but Number 8 would forever change our lives. Since a visit to Dr. David Stein in the Division of Developmental Medicine at Children’s Hospital Boston didn’t require any paperwork on my part, this was actually one of the first appointments that we were able to check off our list from Dr. Skotko. Of course, we waited and waited and waited some more for this appointment (from June 2011 to October 2012), but Dr. Stein was wonderful. And when he recommended that we have Jack tested for autism and ADD, we thought he was just being thorough. We didn’t realize that Dr. Stein had already determined that Jack had autism; he just needed to do the testing to prove it. So then we waited and waited and waited some more for the autism testing (from October 2012 to February 2013), which confirmed Dr. Stein’s suspicions–Jack had autism. My husband and I weren’t blindsided by the diagnosis. Nope, I had already been blindsided months before that in November 2012 by Jack’s school when they, without warning, sent home three tests for me to complete. Tests that asked about Jack’s behavior, skills, etc. I knew they were tests for autism. In fact, one of them was actually called “Childhood Autism Rating Scale”. What I didn’t know was that Jack was the only child being sent home with this paperwork. No warning from the school, no “heads up” from them. Just “Fill out the enclosed forms and return by tomorrow.” The “Childhood Autism Rating Scale” (aka CARS2-ST) is really “fun” because you get to tally up your score and find out exactly how autistic your kid is! And look how Jack did:
“Severe Symptoms of Autism Spectrum Disorder.” SURPRISE! And that, my friends, is how we found out our son had autism. And severe autism at that! I never received a phone call from the school, no follow-up, no explanation, nothing. I’m sure they were going to explain it all to me at Jack’s next IEP meeting, but I couldn’t attend the meeting. By that point, my world had all but fallen apart, and the thought of attending the IEP meeting was enough to send me to near-panic attack. So I told them to hold the meeting without me. And then I fell apart some more.
By the time the date of Jack’s autism testing rolled around in February 2013, we already knew what Dr. Stein was going to find. I had already (poorly) dealt with it and was ready to move forward. One very important thing that Dr. Stein’s visit included was testing to determine Jack’s “mental” age, THEN autism testing based on Jack’s “mental” age (something that Jack’s school didn’t take into consideration with their CARS2 testing). Dr. Stein determined that Jack was 21 months old, mentally, which didn’t come as a surprise to us because we had been telling people that Jack was about 18 months old, mentally, for several years. But it was nice to know that we were all on the same page and that we weren’t parents in denial, believing that their child was on par with other 6 year-olds, only to be told that their child was essentially still at the toddler stage. With Jack’s mental age of 21 months in mind, Dr. Stein did his testing and the conclusion was that Jack had moderate autism, not severe autism as the school’s testing had determined. This made more sense to us. A diagnosis of Moderate Autism seemed to fit Jack much better than a diagnosis of Severe Autism. So Jack’s lack of progress–explained. CHECK!
Since Jack’s autism diagnosis I have done my best to transform myself from Shell-Shocked Mom to Pseudo-Force-to-be-Reckoned-With Mom. I’m too passive-aggressive to become anything more than that, and that’s fine with me. I don’t want to be the mom that the public school system dreads. I just want to be the mom who is knowledgeable enough to play the game. And dealing with the school system is a game. It involves strategy. It involves planning. It involves good timing. You can win a card game by bullying everyone into giving you the cards you want, or you can win the game by being patient and playing smart. I’d rather be the latter.