Well, here is a bit of my backstory.
I worked in several schools as an after-school teacher for 2 years, was a respite care provider for kids with special needs (primarily Autism) for 3+ years, was a substitute special education teaching assistant for 2+ years, an in-home teaching assistant for a special needs student for 1 year, a pediatric occupational assistant for 1 year, and am after-school coordinator for 1 year. There were some other school related jobs in there but you get the gist. I basically live and breathe kids. I have a soft spot for working with kids with special needs and being able to support their parents.
Since my 4.5 year old son was 2 I have been saying that I thought he was somewhere on the Autism spectrum. Everyone kinda laughed and told me, “No he’s not. Don’t say that.” But there were always just little things he would do that had my brain going, “Ya, I don’t know about that…that isn’t quite right.” Little things like not being able to stand doors being open. If a door was open he would have to close it at age 2. Ok, no biggy. But then adding in the fixation on super random things, the repetitive behaviors, the constant spinning, and other things that honestly my exhausted, pre-Alzheimer’s brain just can’t recall at the moment.
Anywho, fast forward to Killian becoming a big brother a little bit before his 3rd birthday. He LOVED “his baby” and wanted to hold him the second he woke up in the morning. We of course had the typical issues that all first-time siblings have with being a little bit too rough and not understanding that you can’t go all WWF throwdown on the baby. Imagine that, right?! I mean, what a HUGE surprise! You can’t Hulk Hogan body slam the newborn human larva!!
Well, as the months went on Killian’s behavior REALLY started becoming bad. I mean, to the point that I was crying almost nightly because I did not understand why I was failing as a parent. He was SO aggressive to not only Baby Oliver (pretty sure Oliver’s name has officially been changed to Baby Oliver even still) but to everyone. His little friends at church were becoming scared of him and not wanting to play with him. He would go from 0-60 in less than half-a-second. Punching, kicking, screaming, throwing anything within reach, and OMG the arguing!! *Insert frustrated growl*
One of the most defeating things as a parent is exhausting EVERYTHING you know how to do and still things are getting worse.
Now onto the medical side of things.
I went to his OLD pediatrician, Dr. D-Bag. But no, seriously. Dr. B was nice and friendly but every time I went in with my concerns and professional knowledge from working with kids on the spectrum for so many years and he was always super dismissive. “No. *laughs* Your son does NOT have Autism. He just laughed. He looked at my face. He is just a really active boy who is reacting to having a brother.” I went in multiple times, sent many emails, and made lots of phone calls. Every time I was told basically the same thing. I’m crazy, I don’t know what I’m talking about, and I’m overreacting.
I began spending a lot of time talking with my new Bad Mom friend (yes I am in a local FB group called Bad Moms because I’m awesome) whose name is Emily, AKA “My Yoda.” Her son is currently in 6th grade and is ADHD and has high functioning Autism. She has been a MASSIVE support for me in guiding me through this life from the parent side. She told me what type of doctors he needed and that’s when I learned about Developmental Pediatricians.
I requested a referral to a Developmental Pediatrician knowing that there is a 9+ month waitlist just to be seen for an initial appointment to establish care. I told Dr. B that I did not care about the waitlist. Either he needs it and great, we are already on the list, OR he doesn’t end up needing it so we take him off the list. He agreed but STILL DENIED putting in the referral!!!!
At this point he is 4 years old, did his first 3 VBS classes with different churches throughout the summer before starting preschool. Each VBS he attended he was given a one-on-one aide because of his behavior and aggressive tendencies. Multiple parents who had lots of time to interact with him agreed with me that he is somewhere on the spectrum and has ADHD. These parents are moms who have kids who are on the spectrum and have ADHD. They know what they are saying because they are LIVING it!!! They SAW in Killian what they went through with their kids at his age!!
Again, I went back to Dr. B and told him all of this and he told me no.
He did however indulge me by sending out a referral for behavioral therapy and occupational therapy which was the ONLY good thing that came from him.
I emailed his soon-to-be preschool teacher, Errin, a couple months before the start of school in mid September. She pointed me in the direction of NWRESD who deals with the educational side of things here in Oregon for kids with delays. And thank God she did! I immediately call them and play phone tag for a few weeks and then fill out the ASQ and ASQ:SE forms online. I have a 2 hour phone call with one of the lead ladies and answer question after question about everything Killian. We get an evaluation scheduled for 2 day before he starts school. She tells me that it is a 3 hour time block but they generally only last 1-1.5 hours. HOWEVER, after the talk we had she warns me that they will most definitely take the full 3 hours.
Day of evaluation we drive 45 minutes out to the headquarters and thankfully my dad had the day off and came with me so that once the eval starts he can take Oliver on a “Papa Date” while I stay with Killian and the 2 evaluators. WE WERE THERE FOR 3 AND A HALF HOURS!!!!! He had a really hard time staying on task, threw things, slithered on the floor, hid under chairs, and all sorts of undesirable behaviors. At the end of it all it came back that he had delays in EVERYTHING the tested him for!!! Receptive language, expressive language, cognitive, social, adaptive, fine motor, gross motor, and perceptual motor.
I IMMEDIATELY ask my dad to drive so that I can call Dr. B and tell him that I was right and that my son NEEDS help!! Can you guess what happened?? *Snarky look*
He told the nurse to tell me to stop calling because he already told me no.
One of the evaluators straight up told me, mom-to-mom, that she would switch providers. So guess what I did. I SWITCHED PROVIDERS!!! Something that I had been thinking about doing for a long time but was to afraid to do because I didn’t want to step on anyone’s toes or offend anyone. I am still learning to be more assertive.
I drove over to his office and requested the release of information paperwork so that I could get the process started faster and gave them the paperwork from his NEW provider the very next day. I had already gotten him established with a new pediatrician before we even got home from the headquarters after his evaluation after talking to his nurse.
My favorite receptionist was there and she was so sad to see me leave but when I told her why she gave me a knowing look and told me that she totally understood and was proud of me for being a “mama bear” and standing up for my boy. We exchanged numbers and I texted her the results and Bell Curve from his eval and she was so mad FOR me that Dr. B was so dismissive.
I was still fuming when I got home and emailed him the copies of the results and told him that we were leaving his practice. My receptionist friend told me that I needed to call and speak to the office manager and tell them everything that I had gone through and that I was now having to leave to a new doctor to get the help that my child needed. I am a very passive person. I don’t like to cause trouble or hurt people. I am an empath and it scares me to make people mad. But with everything that had gone on and siphoning the inner bitch from several of my friends, I made that call. I knew that even if one other parent was struggling with this same problem and I could bring it to light to help them, then I needed to speak up!! I spoke on the phone with the lead office manager for 30 minutes and she profusely apologized for what I had been through. She assured me that she was going to take this matter to her superiors immediately and made it sound like this wasn’t the first complaint regarding this.
Fast forward to Dr. T, the new pediatrician. I LOVE HER!!!!! As soon as we walked in she asked me question after question about Killian, typed like a maniac the entire time, and without second thought IMMEDIATELY sent in the referral for the Developmental Pediatrician, continued OT and BT (occupational therapy and behavioral therapy), and made copies of his evaluation report from NWRESD which is 20 pages long AND READ IT!! I asked her if I could give her a hug and i cried in her arms telling her how thankful I am for her. She was so confused and said all she did was send in a simple referral. I explained the struggle I had had with Dr. B and she was so heartbroken and angry about the lack of proper care we had received.
Killian started preschool and got an IFSP (individualized family services plan) which is kind of like an IEP (individualized educational plan) but for littles through NWRESD. He continued with OT weekly and BT every other week and after both of those therapists and Dr. T sent in noted to Providence Children’s Development Institute in hopes that he could be seen sooner than the 9+ month wait and after only 2.5 months of waiting we got in!!!
Dr. G, the DP (Developmental Pediatrician) is amazing. She is a new doctor at the center and had done extensive work at an Autism Research center in UC Davis. She made copies of his NWRESD eval report and his IFSP paperwork and gave me an Autism diagnostic questionnaire for his teacher and myself. When we came back a month later she showed me the results, made me copies of it, and was talking about hings from the eval that she had taken copies of the month prior. It was AMAZING to have a provider that actually took the time to read the EXTREMELY detailed play-by-play write up of the entire 3.5 hour evaluation that he went through. She quoted things from it from memory and I can’t tell you how happy it made me to know that she actually took that time and effort to be as knowledgeable about my son as possible to be fully prepared for our appointment.
With the results from mine and Errin’s forms, seeing his behavior and interactions the month before and in that current visit, as well as reading everything from his eval report she told me that she agrees with me about him having ADHD and Autism and has us coming back in on 3 Jan for an ADOS (Autism Diagnostic Observation Screening). She is having him continue OT weekly without any breaks, start BT every week instead of every other week, do an audiology screening, and start speech therapy to help with articulation and social communication skills.
I’m sure most people would be upset with this. But I am SO happy!! I FINALLY have answers!! I FINALLY have a medical support team!!! I FINALLY have a plan!!
So, now that you are all caught up on my life thus far, with regards to Killian, *deep breath* how are you??
-The Lazy Mama