Diagnosis day

Wednesday, March 6, 2019

February 26, 2019 will probably not be a day I'll forget, ever. It's been permanently seared into my brain and filed away with all of the other big, "important" dates- birthdays, anniversaries, milestones. etc. February 26, 2019 is the day my darling 2 1/2 year old son was officially diagnosed with autism and our world forever changed.

Let's backup a little bit. Remember this post from just a little over a year ago? I talked about how I was just coming to terms with all of the "red flags" I was noticing for autism with my then 17 month old son Josiah. Then later I talked about his evaluation for speech therapy, occupational therapy, and physical therapy. I remember as soon as he started therapy I still had a glimmer of hope that maybe he didn't have autism and that maybe it was just some sensory issues, delayed speech/communication, and a few missed milestones that needed catching up to. (See this post). Going to therapy with him made me realize how mild his issues seemed compared to other kids I saw there and further planted those little seeds of doubt...that maybe I was wrong, and a little speech and OT would straighten things out and he'd be fine after a little while. 

He was making progress, after all. Just not very much. The words still weren't coming after months and months of speech therapy and he protested just about everything they tried to get him to do in OT and PT. His eye contact improved, he started looking at you when you called his name (sometimes), and he learned how to sign "more" for his cup of milk. Small victories. Huge for us! But still. I knew that while these small victories were signs he could learn and be taught things, it still didn't change much.

A few months ago we had to change up our schedule and that meant we had to switch therapists. I straight up asked one of the new gals who had only seen him once if she thought he had autism. I said "We haven't been given a diagnosis and I just don't know what really is even 'going on' with him. What would you call it? Do you think he's on the spectrum somewhere or something?" She nodded immediately and said "Yeah I see a lot of kiddos like him and I'm not a doctor so I can't say for sure, but I think yeah he probably is on there somewhere." My heart sunk. I knew she was right. I asked her how we go about getting a for sure diagnosis, since it was coming up on almost a year of doing speech and OT every single week with minimal progress and still no real diagnosis. I told her he needs more. I leveled with her and told her I've had really bad PPD & anxiety, I've got a preschooler who dropped out due to extreme anxiety and emotional issues and I'm home all day just surviving with the 2 of them and we are not thriving. I was like "He needs way more than just this to make and progress and I can't help him on my own like this." The therapist was SO sweet and helpful. She said she totally agreed and would have our FRC (family resource coordinator) call me later that day to discuss our next steps. 

The next steps consisted of a check up with his pediatrician just to touch base with her and ask about getting an autism screening (or whatever else she thought should be done). I told her that a few friends had mentioned ABA therapy for their children with autism and that if Josiah did in fact have autism that I thought ABA therapy might be a good option for him. She agreed that he needed more than the 1 hour of OT and 30 minutes of speech therapy he was currently getting. I left the pediatricians office with a list of places to check out for an autism screening to get a diagnosis (or not, I kept thinking. We'll let the experts decide, I reminded myself). Apparently not just any ol' doctor can diagnose someone with autism. 

Next I got to blindly choose from the list who I wanted to call to screen my child for autism. For anyone with like me with really bad anxiety, phone calls like that can be extremely stressful. But I powered through and I started with the first name on the list, only to be quickly shot down by the first person I got on the other end. They weren't doing screenings for kids that young. Call this other place. I jotted down the number and noticed that it was the next one on my list. I thanked her, hung up, and took a deep breath before trying again.

I called the next place. I gave an even longer explanation as to why I was calling because now I was flustered and off my game by getting so quickly shot down before, and oh my gosh am I giving this lady too much information I think. She interrupted me and said "Ma'am- we're not doing any autism screenings at this time. We just don't have anyone that does them right now." I quickly thanked her and hung up again feeling even more discouraged. Why didn't his pediatrician just give me a referral to a specialist or something rather than have me call from a list of people who apparently cannot help me? Again- for someone with anxiety, this element- advocating for your kids on the phone and trying to get someone to help you or get you to the right can be almost panic-inducing sometimes.

I wanted to give up but I knew how long it takes to get the ball rolling for medical stuff and I didn't want to waste time not making this phone call, so I scanned the list again and the name of one of the doctors and the place she practiced stuck out to me- I remembered it from a local parenting group I'm in. People love her and that place in general, so I decided to give them a call. They were really nice and helpful and I wished I would have just called them first. They took some basic info from me over the phone and told me to fill out some forms and mail them in and they'd call to set up the appointment for the screening. Done and done, I mailed it all in, and I waited.

It took about a month to get in with this doctor, as she's very busy and very popular amongst the "crunchy" moms in my area. I had the day- 2/26/19, written in my planner and it felt like a countdown. To D-day- the day I knew my son would be diagnosed with autism. Despite the fact that we had just recently celebrated a flurry of new milestones he was hitting- stacking blocks, pointing to objects, waving bye-bye, saying mama, imitating people, attempting to make some new sounds, and all of these other exciting things for us...for him...I still knew it didn't change anything really. It showed that yes, he was capable of learning things. But it didn't erase all of the other red flags and missed milestones. 

He had been working so hard in OT for the last four or five weeks leading up to this flurry of new things he was doing and it was so exciting. His new therapist just clicked with him. She was so sweet and patient with him. They were doing something called RIT, or Reciprocal Imitation Training. Basically, she's trying to teach him to copy her and get him to notice her copying him. Josiah doesn't play with toys as they should be played with. He doesn't interact with other kids really...he has no interest in what other kids are playing with around him. Give him a pile of blocks or some legos or a pretend kitchen set and he doesn't know what to do with them.

Josiah with his favorite occupational therapist.

The RIT therapy was slow going at first, but finally after about 4 weeks of sitting in this little room with him we had a breakthrough and he was copying her. I remember with tears in my eyes the look of triumph on all of our faces when his therapist put a beaded necklace around her own neck and Josiah did the same exact thing, carefully placing the necklace on his own neck. We jumped up and cheered! For weeks he would ignore her for the entire hour of therapy and run away or cry if she tried to interact with him. The mimicking thing was working and the goal is that once he understands that concept that he'll build and go from there, and that it will start clicking with the speech part and he'll mimic sounds and words too.

So here we were on 2/26/19, just Josiah and I on our way to his screening appointment. We pulled into the parking lot and as soon as I put the car in gear and the automatic door locks click I know I've got about 3 seconds to get moving before Josiah starts wiggling/kicking in his seat and begins to cry.  He doesn't like to sit in the car if it's not moving. I got him out and slung the diaper bag filled with snacks, a sippy of milk, and a handful of his favorite fidget/sensory toys over my shoulder and made my way inside. I remember wrapping Josiah in my jacket and squeezing him extra tight because it was only 10 degrees that day...and he likes to be squeezed. It's a sensory thing and it's soothing when he's sad or mad or just needs to feel extra secure. I needed to feel extra secure, so I squeezed him tight and we headed inside. 

Once inside I found the pediatric office's name on the building's directory board. To my dismay I discovered it was on the third floor and we'd have to take the elevator. Panic hit me. I didn't think I'd ever taken Josiah in an elevator, at least not since he's been old enough to be aware of being in one. Maybe as an infant, but certainly not any time in the last year or so. I sighed and crossed the lobby to try to hit the button before we missed the closing door and got to it just in time- it was empty! I hopped in and quickly hit the button for the third floor, praying the doors would close before someone else darted in. I hammered the "close door" button over and over again with my fist. I was already sweating with my big coat and snow boots carrying Josiah and his bag of things we can't leave home without. As soon as the doors closed he let out a wail and went completely rigid, shaking violently in my arms, clawing at my chest, and kicking me with all of his might until I dropped him onto the elevator floor. 

That was just about exactly how I pictured his first elevator ride going. I know my son and he hates tiny rooms. We've learned this through therapy. Small rooms with the door closed are not something he's a fan of. He used to beat on the door and throw himself on the ground during therapy sessions that were held in the small, private rooms for one-on-one work. So we worked through that fear for weeks, but it's still something we face that leads to a meltdown when the timing is just right. Crowded aisles at the store are another big one. If there are too many people around he'll start shaking his head at anyone making eye contact with him. Sometimes people think it's cute but I warn them that he's not friendly and we keep cruising along. Often times someone will get too close, just trying to squeeze by us and Josiah will lose it. He'll grab something off the shelf and throw it and scream on rare occasions, but his ear-piercing shrieks are almost inevitable.

Back to the elevator. I peeled him up off the floor as the door opened and I walked out into a (thankfully) empty hallway with the pediatrician's office door right in front of me. I tried to soothe Josiah for a few seconds, who at this point was whimpering and looking around curiously after hearing the elevator door ding. I squeezed him again and told him we were going to go inside and see a nice doctor with some fun toys and that he'd be able to play with his dinosaurs. He whimpered again and we went through the door into a (thankfully) empty waiting room where he quickly found a table full of toys.

I barely had time to give the receptionist his insurance card before the nurse came out and called his name. I had to tear him away from the toys he just got so excited over and pick him up again, which resulted in more screams and his body went completely stiff and then limp. He flopped onto the ground again, taking me down with him. The nurse had to grab my arm to keep me from completely falling onto my knees, but thankfully we avoided that. The nurse was sweet and didn't seem phased by the screaming at all. She gave me a sympathetic look and shouted over the screams "It's OK buddy, we have more toys for you back here." That quieted him down quickly and we scurried down the hallway into an exam room.

Once in the room he was totally fine again. He was completely engrossed in some board books and trucks while I talked to the nurse and she tried to get his temperature and pulse (physical exams never go well so that's about all they can ever do on him). He tolerated it but swatted her away at the same time. She bobbed and weaved and got the info she needed while being swung at by a toddler. I just apologized.

She left the room and the doctor came right in, followed by a younger, new doctor who she said was shadowing her for the day. Josiah took one look at the both of them and began shaking his head no...which I knew meant he was getting anxious and probably thought there were too many people in this tiny room with us. He got up and hid under the chair next to me and peeked out at the doctors curiously. She introduced herself to me and told me she had already studied his health history and the information I mailed in and that Josiah could stay right where he was if he was comfortable there. 

We spent a good 30 minutes talking about Josiah. My pregnancy, his birth, and all of his health history up until now. We talked about when we first noticed the red flags and went over the timeline of when I brought him to his pediatrician last year, the plan to begin therapy, and everything that has happened since then. She asked a lot of questions and let me talk as much as I needed to. She didn't interrupt and really listened. My voice cracked most of the time and I had a huge lump in my throat that I kept trying to swallow. Don't cry, don't cry, I told myself. I made sure to let her know I'd been suffering from some pretty severe PPD and anxiety too and told her I was pretty sure that was a contributing factor with everything too.  

That's when she looked at me and said "OK let's talk about you? Do you get any breaks? Do you have any help?" I crumbled. I couldn't stop the tears. The lump in my throat pushed it's way up and I broke. "No. I don't have any help at all" I confessed. I told her that my husband works a lot and that we had no family around, no babysitters, no helpful friends who offer to pick up Harper for play dates or anyone I could ask to even just watch one child for a few hours if I needed a break. I told her the only time I get away from my kids is the 30 minute drive I make once a week to see my own therapist on Mondays. Besides when my eyes are closed at night that's my only break. She narrowed her eyes at me (jokingly, kindly) and said "Well I am glad you're seeing a therapist to take care of YOU, but I'm going to see what I can do about trying to find you some help because you really need to give yourself regular breaks. Don't beat yourself up over just being in survival mode and when the focus is still just making it through the day until bedtime. You're doing a really hard thing so cut yourself some slack." 

When she said those words it was like a weight had been lifted off of my shoulders and I could finally take a deep breath. I've had other people tell me the same thing- to cut myself some slack and not feel so guilty about everything. That I'm doing everything for everyone and that I'm running myself ragged. That no one can do everything like this, full time, all day every day, sun up until sun down, and not get burned out. She told me she'd look into something called respite care and see if she could find me some help somewhere, and it really touched my heart that she actually genuinely cared about my well being. It's been a very long time since anyone has asked me if I was OK and if I needed anything. I needed to be seen and it was like his doctor saw me drowning and threw me a life raft.

After going over everything with the doctor- his medical history, therapy schedule, diet, sleep schedule, fears, likes & dislikes, and what our home life is like she asked if Josiah would tolerate a physical exam and I said no. I told her the nurse barely got his temp and pulse and she just laughed and said it was fine, that we could skip most of it. She got down on the floor with him and showed him her bedazzled stethoscope, which he immediately yanked out of her hands and started whipping around violently, barely missing her face. I apologized. She said most of the kids do that.

She sat for about 10 minutes just letting him check out her tools- the stethoscope, a tongue depressor, her flashlight to shine in his eyes (which he actually liked), and he let her look in his ears after that (I think he was a little smitten at this point). She tried to give him a high five and he just stared at her, but he didn't pull away when she took his little hand and made him clap hers. He laughed and did it again on his own and we all laughed and clapped for him. High fives for everyone after that! He loved it. I told her he's never behaved this well for an appointment of any kind and that he seemed to be really comfortable there (mental note- switch primary care doctors to this lady!)

Then she looked at me and said "OK. I'm pretty confident moving forward with the diagnosis and I agree with you on the ABA therapy, so I'm going to put in a referral for that." She went on to tell me that she'd update his medical chart and it would probably take a few days for it all to go through the system or whatever and that within the next week or two I should expect a call from the therapy place to get everything going. 

I didn't quite understand.

"Soooo, what do we have to do about the diagnosis now?" I asked.

"We just did it. He's somewhere on the autism spectrum." 

I didn't really hear anything after that. I didn't have time to sit and process it. We said our goodbyes. Josiah started screaming and thrashing and I had to wrestle him to put his shoes and jacket back on. I had to tear the truck out of his hand that he was playing with and offered him his dinosaur toy from the diaper bag. He immediately threw it at my face and fell back on the ground screaming, hitting his head on the floor harder than he intended which made him really scream. I sat in the room with him for a few minutes trying to calm him back down. 

We walked out into a crowded hallway. A kid was doing an eye exam at the far end of the hallway blocking our exit and there was a traffic jam of people waiting to get by. Josiah once again crumpled to the ground and screamed. Everyone was looking at me and I felt myself start to sweat under my heavy winter jacket and hat. Normally when we're in public and he has a meltdown with a lot of people around I start to feel like I'm going to have a panic attack. I sweat, I start to shake, I can't talk or think clearly and I just want to run out of the room or leave wherever we are. 

But this time something was different. The instant I started to sweat under the weight of all the things- the diagnosis he was just given, the last year of therapy every single week, the doctor visits, the phone calls, the paperwork, the crying, the screaming about everything, the hitting, and the guilt...oh the guilt I have felt the last year every single day when he's getting too much screen time or not eating a vegetable or we're not doing something educational that day. It's not that the weight of all those things disappeared in that doctor's office, but it shifted. Because it all made sense now. 

Instead of having a panic attack, I felt a weird sense of calm kind of come over me and I was able to think clearly despite the chaos going on around me. I felt how afraid he was in my arms. He was shaking and looked truly terrified and I just wanted to protect him from whatever it was that was making him feel so scared. Everything around him in that moment was scaring him and I was his safe place to fall. He felt secure with me. This wasn't just a fit or a tantrum. Instead of stressing myself out over who was staring at me while he screamed, I blocked them out and put my focus on my sweet boy in distress. I squeezed him, I spoke calmly into his ear, and carried all of us out of that office with my head held high. Other people's opinions and looks didn't matter anymore.

I left that office with an answer we'd been seeking for over a year- a diagnosis of autism. It changes everything, and at the same time it changes nothing. He's still the same kid. The biggest thing is with this diagnosis Josiah can get the help he needs. A diagnosis will now get him access to all the resources he needs. Soon he will start intensive ABA therapy which is about 20 hours a week of hard work. I hope we can work on his communication and decrease the frustration for him. I cannot imagine what it's like to not be able to speak or tell anyone what you need, want, feel, think, etc. 

This diagnosis makes me an autism mom and Josiah's number 1 advocate (not like I wasn't before, but now it's official). I've been reading a lot of autism blogs and articles and my God, these parents deserve medals for all that they do. I hope I am that strong for my son and for my family.

Wearing his new compression shirt he just got through insurance for occupational therapy.

As far as Josiah goes, an autism diagnosis doesn't give us all the answers. It's only the beginning and only time will tell where he falls on that spectrum. This last year has showed us that he is capable of learning things and we have hope that some words will come eventually. That he'll one day play with friends and go to school and be a "normal" kid. I have so many hopes and dreams for him and I'm going to do my best to make sure he has every tool at his disposal to grow and thrive like a little boy should. We've got this, buddy. 

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Melissa Swenson and Lulu & Sweet Pea