Ezra's own little world.

The longest meltdown I had with Ezra was 2.5 hours long.

My friend that mentioned the autism word came over that day after an hour and a half of melting and showed me one way to help him. He turned off my bedroom light, set him in the middle of the bed and kept reinforcing that Ezra stay in the middle of the bed. Ezra regulated a lot faster that way. The dark, cool (not carbon monoxide filled) room was helping him be okay. I was left with "he is a very strong, and strong willed little boy!" But at least an idea of something I could do during these insane outbursts.

Ezra is VERY physically strong. And just the sweetest little boy. It was horrible watching him struggle through whatever this was/is. These episodes would happen out of seemingly nowhere. He would wake up and start screaming. He would be playing and start screaming. It got to the point where I was scared to take him out to do anything or go anywhere because I wasn't sure what would happen if I did.

I started looking into getting him evaluated.

I took him to the chiropractor and she got us a referral to Iowa City. They denied us.

I took him to his pediatrician and they got us a referral to Caravel. They denied us.

I asked his pediatrician what was next and they literally told me to call around and find someone who would take us for an autism diagnostic evaluation and they would write up the referral after I did the leg work. So, I called as many places in Illinois as I could, starting with the ones closest to us and moving out from there.

Finally. Easter Seals in Peoria (about 1.5 hours away) was willing to take us....in 18 months....give or take.

Come. The. F***. On. (Hello, patience!)

I got the referral and the woman at Easter Seals called me back and said that she would also give us a referral for Early Intervention, so I could get Ezra some help right away. GREAT!

The case worker from Early Intervention showed up, shortly after the referral, a trainee. She asked about a million and one questions and said that she would set us up for Speech, Developmental and Occupational therapy. Ezra was starting to use some words by this point, but mostly communicated using sign language.

I was most desperate for occupational therapy, which I was told would be the best to help me navigate these meltdowns. He was having up to 5 a day and I was exhausted, plus waking up between 2-10 times a night. It was so much. I hadn't slept in....a very long time.

Speech and Developmental therapies started immediately, both once a week. He also started play therapy at a therapy center. And we waited for Occupational. The other therapists would hear me talk about all of Ezra's oddities and uniqueness and say "that's something occupational therapy can help with". That's what I heard over and over and over again. The case worker was supposedly on it, but every time I followed up they had dropped the ball. It was infuriating for me, for Ezra.

Every time they said that he would benefit from something, I worked on getting it for him. A large beanbag, weighted blanket, stepping stones, obstacle course blocks, fidgets, a swing, sensory bin...the list went on. It was a lot, but every time I saw a glimpse that something was helping, I was given just a ][little bit of hope that he would be "okay" and I would have more tools to help him.

Ezra had developed so many amazing qualities also. He had an absolute obsession for all things sharks! Toy sharks, sharks on TV, shark shirts, shark shoes and his favorite blue shark rainboots. He was obsessed with numbers. Noises he wasn't a fan of and we spent a lot of time at home with the tv off, sometimes music, sometimes now. He loved rain sounds to sleep. Even without words, he was so imaginative and so unique and vibrant and just...magic.

One thing that I knew for sure, was that despite what or if he had a diagnosis that was tangible, Ezra lived in his own little, very magical world and I was so honored to be the one to step foot inside.