What's in a diagnosis?

For four years, Evie has been our beloved tyrant.

She came from the hospital and immediately put us on a schedule. She was exhausting. Beyond exhausting with her strict schedule and highly volatile nature. I remember the night I walked the floors with her all night, in tears and crying with her, because family from out of town had visited that day and her whole schedule had been tossed out the window. She just screamed and arched her back and screamed more. At my wit's end, I broke down and called my mom. I had walked the floors until I was too tired to walk more and I simply didn't know what to do. She came right over, sat with the baby while I got a couple of hours of sleep. I swore then that I wouldn't put her through anything like that again and we all stuck rigidly to her schedule from that day on.

As an older baby, I read autism check-lists and development lists. I always just had this nagging worry. One I chalked up to first-time mom. She grew fast, she passed all her physical milestones, most of them early. And as soon as she was walking, she was climbing, jumping, falling all over the house. She didn't babble. And she didn't talk. But the doctors reassured me she was meeting her milestones and she was fine.

As a toddler, she continued to be strict about her schedule. You could nearly set a clock by her. As we moved from mushy, squishy baby foods to lumpy, chewy baby foods and even real foods, Evie became a picky eater. She became one of those kids who lived off chicken nuggets and goldfish. She only wanted to watch Dora the Explorer. She still wouldn't talk. She could. Sometimes she would talk, but only if she had to. When her little sister came along, Evie was 18 months old and she regressed quite a bit, which I expected. But socially, she never sprang back forward like she should have.

As she grew into a preschooler, something continued to gnaw at me. She finally started talking more, but it was minimal at first. Only just enough to prevent the doctor from referring us to a speech therapist. I spoke to the pediatrician at Evie's two year check up. Asked about how strict Evie was about sticking to her schedule, her horrifying meltdowns when there was any change in her life, her many "quirks"...the pediatrician told me that she was clearly very bright. And that unfortunately for me, life with smart kids was difficult. Uh, thanks.

At another doctor's appointment, the doctor just told me that Evie was obviously very sensitive. Beyond that my concerns were dismissed and I was once more told she was healthy. She was fine.

But she wasn't.

Evie continued to need a strict daily regimen. She woke up, she had breakfast. If she had oatmeal, which some days she did, it could not be above room temperature. If she dropped some food on herself or her eating area, it had to be cleaned up immediately. Afterwards, she needed to get dressed. She could not put on her regular clothes before breakfast. When dressing, clothes needed to be specific. Not to tight. Nothing scratchy or pokey. Seams needed to be small. Socks needed to be low. No turtle necks. No wool.

I learned what she needed and just adapted to it. To not adhere was not worth the struggle. Putting her in clothes she didn't like resulted in meltdowns of colossal proportions. Changes to our schedule led to unbearable evenings and nights where Evie could not and would not go to sleep. Until she became old enough to say specifically what she did and didn't like and explain what was wrong, life with Evie was quite miserable. Even once she was able to express herself, life was only slightly less miserable.

People told me she needed more discipline. More time outs. More spankings. I couldn't let her be the boss. When she threw her fits I needed to put her in her room and let her cry it out and she would stop. As soon as she didn't have an audience, she would stop. I tried that. Her meltdowns were borderline scary, and I would try putting her in her room and she would just get more and more upset. Until she was on the verge of hyperventilating and too exhausted to scream. Only then would she calm down. More spankings and more discipline only worsened things as well. I could tell looking in her eyes that frequently her behavior scared her. That when she was beyond my control, she was beyond her own control as well.

I tried a new tactic. Instead of raising my voice and trying to boss her into submission, I got quieter. I sat with her and helped her take deep breaths and tell me what was wrong when she got upset. Most days, that helped. She started to learn to help herself and learn new tactics for dealing with her feelings. The miserable months changed to bearable ones. Though I told my mom that it worried me that Evie wasn't able to manage herself, that we were managing her. And I felt that she would never be able to go to school because there was no way a teacher could handle her in a room full of other kids. But I didn't know what else to do. Everyone seemed to feel that Evie was spoiled and undisciplined or simply high-maintenance and strong-willed. I learned to stop telling friends and outsiders about life with her, because I felt like I was the worst parent in the world. Why couldn't I control my child? Why couldn't I teach her to stop freaking out over the smallest things?

One day, I was perusing the internet, blog hopping, and found a blog about a mom whose son had been diagnosed with Sensory Processing Disorder. She told a story about going on a bug hunt with his class from school, and how her son was unable to find a bug in the allotted time, like many of the other children. However, when the teacher instructed them it was time to go back inside, her son had a meltdown. Crying inconsolably, heartbroken, devastated. Beyond anything you would expect or could truly express in words. And the mom stayed out with him until he was able to find a bug. This was Evie. We hadn't been in that particular situation before, but similar ones. And Evie was inconsolable.

A sad light bulb went off. I began scouring the internet for everything I could find about Sensory Processing Disorder, or SPD. I found dozens of sites, blogs, check lists. Types of therapies and tools to help SPD kids. But even though I thought this was the answer to what had always been going on with Evie, I didn't know what the next step was.

I thought maybe I should call the pediatrician. But honestly, I was terrified. To call the doctor's office would be to admit that maybe something was "wrong" with Evie. That it wasn't me being a crappy mom or a phase or a bad day. Something was wrong. And I wasn't sure I was ready to admit that. Finally, after wavering back and forth for over a week, I called. My heart was in my throat when I spoke with the nurse. I told her I wanted Evie evaluated for Sensory Processing Disorder and waited with bated breath to hear what she'd say next. Of course, next she says, "Oh. Well, I will have the doctor call you." Great...the next night the doctor finally calls back and I have pages of notes and lists. Checklists that I have filled out about Evie and reasons I have for thinking she might have this disorder. Pages, I kid you not. After a brief discussion, the doctor agreed we should have her evaluated and we discussed where to go. She told me she would submit the paperwork for a referral and wished us luck.

The phone call came from the therapist's office the same week my brother passed away. So, while the appointment was scribbled on the calendar, it went on the back burner. It wasn't something I fretted over or obsessed about. Next thing we knew, the day was upon us. I was a ball of nerves again when we went for her evaluation. And an hour later, the therapist was handing me a fat folder full of reading materials on SPD. She was walking me through home treatments to go through with Evie and talking about what all we would be doing during her weekly therapy sessions.

So there it is. My baby has Sensory Processing Disorder. It is weird on one hand to think about. But at the same time, it's really nice to know she's going to be getting help now. Help that will make it possible for her to control her reactions, control her feelings, limit her meltdowns (which is what the clinical term is for what a SPD child has, not a tantrum). I was told that I have actually already done a lot to make Evie's life easier, like being understanding of her needs and enrolling her in gymnastics so she has an outlet for all that wild bouncing energy. We have a diagnosis, but she still likes her oatmeal cold and her baths lukewarm. And maybe, that's just life with Evie.

Moving On

Like it or not, life always keeps moving.

When you live with little people, life moves quickly and messily forward. Every waking minute of every day is quite full. From wake up and breakfast to clean up and getting dressed to more clean up to activities and play time to more clean up. Lunch, clean up. Naps, snacks, clean up. Supper, baths, clean up. Stories, teeth, bed, more clean up. It's a bit exhausting just to type.

I believe it is something that has made my mother's days easier to bear. The busy work. There is no time for grieving when you are so exhausted.

So here we are. Three weeks into the rest of our lives. Five days into a new year. The first year without Ethan.

And moving on is something we have no choice but to do.

I celebrated Christmas Eve with my in-laws. We celebrated Christmas Eve. Then Christmas. Then New Year's. My mom and Ethan's best friend and myself all went and got Ethan tattoos. The girls stay with my mom. I go to work. Every day goes by much like the one before. This weekend I felt up to making plans with friends. Had a wonderful time and it was great to be with other grown ups. Talk. Laugh.

Life marches on. The day to day pulls us right along.

Most days, I am doing okay. Sometimes I will see something or think something and it all hits me all over again. And then there is that big gaping hole ready to swallow me up. Sometimes I have had the luxury of being able to put my head in my hands and cry for a minute. Or take big gulps of air and replay all the lines that have made all this easier. He's finally better. We will see him again. He's happy now.

But he's still gone.

Sometimes my mantra cannot stop my mind and all I can think of instead is the times we were together and the moments I missed. The dreams that we had for his future that will never come to fruition. All the things I will never get to say. The things he will never get to do.

Sometimes I think we are doing good. Sometimes not so much. Either way. We are moving on.