Advocating isn't for the faint of heart

In my pre-Ezra life, I wasn't very...assertive. "Yes, sir. Yes, ma'am. Do as your told" was kind of how I moved through life. I would find my voice, and have it squelched out in various life circumstances. My divorce changed that (another blog series for another time), and then life with Ezra changed that even more.

Every week that the Early Intervention therapists came to see Ezra, they would ask how he had been? How was he sleeping? How were the meltdowns? And I would express the concern week after week after week and was met with the same words over and over "Occupational therapy will help with that". I started prefacing comments with "I know OT will help this, but do you have any ideas?" And usually was met with "well, it's not my area of expertise but you can try...(fill in the blank)".

I am patient. Almost to a fault. But as I mentioned, just when I think I've learned the lesson, here it is again. I waited 8 months for Ezra's case worker to figure it out and get us an occupational therapist and every time that I would reach out I would get met with "sorry, life has been crazy", "Sorry, it got away from me". So, finally I went up the chain of command and blew up everyone's phones and emails stating that I wanted a new case worker. I fired the old one. And by the end of that day, I sent 10 emails and made 12 calls, I finally had an occupational therapist coming to the house in two weeks!

This provoked me to make (many) more phone calls. I finally convinced Ezra's "dad" to put him on his insurance which opened up so many more avenues to get Ezra a diagnosis or at least rule out autism. I called all of those places I had previously called again. I was on 4 more waitlists.

Then the loneliest day of my life happened.

Let me start by saying, I love my life. I absolutely adore the peace that comes with it and the freedom to be exactly who I am in every moment. The freedom that comes with not having to answer to anyone, or worry about if I got the laundry put away, or how clean my bathroom is by 5pm. There's a lot to be said for the freedom that being a single mom offers. I don't even mind doing all the hard things alone, because it means I'm not burdening anyone else with the chaos that ensues or having the choices controlled by someone else's narrative.

CAVEAT!

The loneliest day I have experienced was this absolutely gorgeous day when my phone rang and it was Caravel Autism Center. They asked if I would have time for a 2.5 hour diagnostic telehealth call THE FOLLOWING DAY! After 10 months of waiting (which is NOTHING in this world of diagnostics), we FINALLY were going to have an idea of what was going on in his little mind. I wanted so badly to have someone to turn around a kiss and hug and laugh and cry (simultaneously) with. Someone who had seen all the hard work, sleepless nights and craziness that we had been through. Someone who knew all the silent tears that I wept over my precious son and not understanding his world that he lived in. But more than anything, I just wanted someone to celebrate with!

I sent his "dad" the news and I only received crickets. He didn't understand. All I had heard from him was how I was lying, a shitbag mom, a b****, and making up all of Ezra's trials to keep him away from him (he still had open visitation that he wasn't utilizing).

I wanted to celebrate bigly! I was as excited as I could be with Ezra, without scaring him. And instead of having that moment that I craved so desperately, I packed Ezra up in the car and we went out for ice cream. CELEBRATION!!!!!! - Can you still feel my excitement oozing through my words and infecting your body?!

The next day, my dad (who Ezra calls "papa-man") came over to sit with the kids so that Caravel could have their assessment with me about Ezra and then we had the portion of the telehealth meeting where they observed Ezra playing and interacting in his space. I was certain that we would NOT have an autism diagnosis. It was definitely something else. Or I was crazy. Or he was just difficult. Or I wasn't strong enough/lazy/. Yet, after two and half hours she went over all of the things she saw and heard from observing Ezra and diagnosed him with Autism Level 2. The wildest part to me was that he wasn't doing any of the things that queued me into the possibility - no meltdown, stimming, no verbal "h's" in every word he tried to say, etc. It was such a mild interview. He played with bubbles and balls and most of all sat on laps and with papa-man. I was certain we weren't going to have an autism diagnosis. I was wrong.

I wasn't super surprised, but I did think that if he was diagnosed at all it would be Level 1...maybe! I cried, which was also not expected; I don't know if I was crying out of relief because someone saw him; or if I was crying out of shock that we were where we were; or...I have no idea; but the tears kept rolling. I again messaged "dad" who several days later responded and said he didn't believe me and would be getting his own diagnostics done later (best of luck, bud!).

I called the man who started this ball rolling and told him. I cried and said "I don't know what I'm going to do" and he said "you're already doing it! It isn't going to get any harder than it already has been, because you got Ezra the help already, early on". I breathed. It felt a lot like birth and transition; when a woman starts saying "I can't do it anymore", that's when the breakthrough happens and birth is shortly after. The birth into Ezra exploding into his colorful, imaginative and brilliant world was already underway, and now there was more help for me to see into it and understand his sweet little beautiful boy brain.

This was the birth of Ezra's awesomeness. The birth of a boy who was going to change the world; my world; our world.