The Results Are In!

It finally happened! After pushing and fighting for my son for so long, the ADOS was scheduled! The Autism Diagnostic Observation Study is a 2-3 hour where they have a script of things to say, ask, or do with certain toys or objects and write down word for word what the child says or how they respond to the situation. Dr. G would bring out a tiny doll set with a mommy, daddy, brother, and baby and then create a situation for them like saying, “Uh-oh, the baby is crying.” Then wait for Killian to respond, if nothing happened she would repeat herself saying the exact same thing. She used different scenarios and would write his response. Then she brought out a few random objects to see what he would do with them. One of them was a CD and Killian was overly fixated on the colors as the disc spun with “atypical visualization.” He would continue to spin it and intently watch in silence and was seemly oblivious to what was being said and done around him. During the Lego portion he would ask for more pieces without making eye contact and instead hyperfocused on the dragon that he was creating. Dr. G would not respond to him the several times he asked until he would make brief eye contact and tell her he needs more pieces, then she would acknowledge his statement and reply.

During the make-believe portion of the test, Killian had a very difficult time pretending that one object was something else. He did not respond well to social intrusion and would become upset if Dr. G would try to play along with him. The dolls were always referred to as “that guy” or “this guy” instead of by name or pronoun of mommy/daddy/sister/brother. When she would grab the disc and say, “This is a space ship,” Killian would reply with an irritated voice, “No, it’s a disc.”

He exhibited functional play with cause-and-effect toys and throughout the entire 3 hours his sentences were disjointed and sometimes incoherent even though his words were said in a correct fashion and included some complex vocabulary. He would engage in brief conversation but usually it was only with topics of his choosing or interest, otherwise he would ignore or even start talking about something completely off topic. He showed zero interest or even recognition in Dr. G’s feelings or emotions when the social press portion of the exam took place. His eye contact was fleeting during the Reciprocal Social Interactions segment. His imagination was limited in play and in the end he met the cut-off criteria for Autism in the ADOS-2 classification.

Based off of my large family history of anxiety and the results of the DSM-5 questionnaire that I and his teacher, Mrs. E, filled out, in addition to the behaviors witnessed during the ADOS, Killian tested positive for Autism and Generalized Anxiety Disorder. His anxiety results showed high levels during social peer interactions and communications.

Killian was also diagnosed with Sensory Processing Disorder and ADHD (Attention Deficit Hyperactivity Disorder). Ya, I know, It’s a lot. But you know what? The second I got off the phone with Dr. G and I had conformation that proved my claims correct, I printed up the copies of his ADOS progress notes and diagnostic results and I danced around my front room. I felt like I could finally breath as a huge weight had been lifted off of my shoulders. My heart didn’t feel as heavy and my stress melted away. I finally had answers and reasoning! I finally had proof!

Now, this is going to sound really bad but there is truth in this. Autism is “The Golden A.” As soon as that diagnosis has been given and the child has been labeled as Autistic, your world has COMPLETELY opened up to specialists, therapists, school mandated assistance that the law will crack down on to make sure that it is being held to the letter. An IEP will be written and I PRAY that he will be given a one-on-one aide at school, even just part-time for the most troublesome parts of his day once he starts Kindergarten in September.

And as happy as I am with all of this, I am also extremely overwhelmed and my anxiety starts creeping in. I start wishing that I had a personal assistant to help me schedule my life. We are now adding ABA Therapy (Applied Behavioral Analysis) to this schedule along with speech therapy and an audiology screening. I am having to call and find people who accept his insurance AND are accepting new patients. I have to fill out even more paperwork for each of those places and add him to the waitlist hoping that a slot will open up for him before he ages out of the specific program that would be best suited for him. I am trying to figure out when we can schedule appointments around school, behavioral therapy, chiropractic care, occupational therapy, little brother’s speech therapy, and the everyday doctor’s appointments like dentists, general practitioners, and pediatrician appointments.

This is all just the very beginning but I am happy to be where I am now.

And then the realization hit that I still needed to break the news to my husband. The man who hears the word Autistic and only sees the kid flapping his hands in the corner of the room while rocking and making the same loud sound over and over again. The man who thinks that Autism means that the child is mentally retarded and can’t do anything. The man who told me he didn’t want to put a label on his son when I told him about the ADHD diagnosis and said that it doesn’t matter because it won’t change how he is with him and then said he doesn’t want to talk about it. The man who used to tell me that everything that was wrong with Killian was my fault and that there is something wrong with me.

To say that my anxiety was in full blast was an understatment. I didn’t know how to tell him. He can be a conspiracy theorist when it comes to doctors and will say that they don’t know what they are talking about and are only trying to get money out of you. I was scared that when I told him, he would respond with all those thoughts and reactions geared at me again. I was terrified that he would be in denial and say that the doctors and myself don’t know anything and that there is nothing wrong with him. He would see the very physically capable son of ours and say, “Look at him! He can walk, talk, and do everything that any normal kid can do. He isn’t sick or dying! He is perfectly fine and there is nothing wrong with him! He just needs more discipline and you aren’t being strict enough with him! It’s your fault for the way he acts!” Every one of my fears about our marriage falling into the statistic of divorce with a special needs child came to me. Even though we both are very against the idea of divorce (obviously in the instance of abuse we believe safety comes before staying).

I was scared. I know I needed to tell him. I needed it not only for our marriage and the fact that he is the father of this child and deserves to know what is going on with his son, but I needed to tell him for me. I needed help with my stress and the weight of going through everything completely on my own for so long. Even though he is not an emotionally empathetic man, I needed my husband to share in this new life WITH me.

So, one night after I put the boys to bed, I asked him to pause his game because I needed to talk to him about something very important. I told him that it was regarding Killian and that I was really nervous to tell him. He got worried that something deadly was wrong and I immediately squashed that fear so he then got frustrated and told me to just spit it out because he needed to know if there was something going on with his son. I reminded him about all of the therapies and doctor’s appointments and evaluations and testings that I had mentioned to him that I have been taking Killian to and he said yes. I then let him know that I got the results back.

I took a deep breath and said, “Killian has been diagnosed with High Functioning Autism, ADHD, Generalized Anxiety disorder, just like my entire family and myself have, and Sensory Processing Disorder.” To which he just calmly replied with, “OK. Is that it?”

I was pretty taken aback. I mean, on one hand I’m like, Is that it?! That’s a long list dude!  And on the other hand I’m thinking Oh thank God! That went WAY better than I had anticipated.

I asked him if he believed us and he said yes and asked why he wouldn’t. I told him that he normally says doctors don’t know anything and make things up and he says, all shocked, “When have I ever said that?!”

“Umm..like EVERY time you go to the doctors.”

“Oh well that’s different. That’s for me,” he says. As if that makes all the difference in the world. *Rolls eyes*

I asked if he had any questions and he said that he didn’t. We did the tests and paperwork and this is what it says. He said he knows that Killian is a little different from other kids his age but he will never love him any less.

I started crying. I told him that I was so afraid to tell him and when I told him why, he said he has no memory of ever telling me those hateful things about it being all my fault or that something was wrong with me. He apologized for having ever said it and asked me to please forget that he ever did since he doesn’t even remember it. I explained to him why I am always so stressed and exhausted when he gets home from work is because my brain never shuts off. I am constantly thinking of things that I need to get done in the house, or appointments that I need to make, doctors I need to call, therapy schedules, school and how he was sent to the office twice this week for hitting kids and the teacher. I told him that I really needed his help carrying this responsibility. Even if that just means he take a little more initiative around the house and with the boys before they go to bed or let me be cranky and frazzled until they are in bed and I can just sit down and talk to him.

He then took it a giant step forward and apologized for adding to my stress by not being more self-reliant and always asking me to do everything for him (find his glasses, get his night-time meds, get him food/drink, etc.) when he is fully capable of doing simple tasks for himself instead of asking me to go and do things for him while I singlehandedly get the boys fed, food put away, get them in their jammies, teeth brushed, and into bed while he stays laying on the couch playing a video game.

That realization and apology was not at all expected but it is definitely VERY appreciated and welcomed.

My friends and family have been praying for me and for my husband’s mind to be open and accepting of this information. And to them, I again thank you.

Our journey has only just begun and I know that there will be a lot of trials and tribulations ahead. But for now, I am rejoicing in the answers we have and the acceptance that was made.

-The Lazy Mama

Where do I even begin???

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

The Journey Begins

Here is my forum. Nothing is off topic. I will go into the good, the bad, the ugly, and the dirty. I am a mom of 2 boys. Killian (2014) and Oliver (2017). My oldest boy has ADHD, high functioning Autism, Generalized Anxiety Disorder, and sensory processing disorder. I am NOT an expert but I will be sharing MY story. I hope to inspire others going through the same journey as me. I hope to help you advocate for your child and give you a place to feel safe in the fact that you are NOT alone. Trust your mama (or daddy) gut and fight for your kiddo. That being said, this is not going to be all about his neurodiversity. This is about everything that I have gone through and am going through in life with these kiddos.

Parenting is hard. No matter what issues your kiddos do or do not have. So sit back, grab a glass of wine, hop into my sarcastic brain child, and enjoy my story!