When Things Are Good, But You're Not
by Shannon Aronin on July 20th, 2015

​Starting this blog made me really wrestle with issues of privacy. How can I be open and honest and real… if I hold back? I also knew, even without naming or including pictures of my son, I could never tell his story without telling mine. Just like his still little, but growing so fast, almost 8 year old hands still fit into mine. Interlaced, intertwined, forever enmeshed. Someday, soon, he’s going to let go of my hand. He might be older than the other kids when it happens, but eventually he will want to cross the street alone, and I will have to let him go. But our stories, and many of the challenges we share in navigating this crazy world, those are ours.

There are a lot of theories about what causes mental illness in children. There is some solid scientific research that is just beginning to find some connections. Red food dye probably is bad for a kid with ADHD. Many kids with autism have digestive issues, and in concert with research about how gut flora can affect so much in our bodies, this avenue looks promising. Other research has shown that mothers who lived very close to highways when pregnant had significantly higher chances of having a child with autism. Older dads seem to have a higher risk of having kids with mental illness. Eventually though, most of us have to face the elephant in the room: genetics.

Generally, our kids didn’t just pop out crazy, like they were the first in the family. Inherited mental illness can be a bit of a twisted ball of yarn. Many seemingly distinct disorders and syndromes share genetic markers. Your mom may have had depression, but you have anxiety. Your dad may have been bipolar and your son is autistic. Your uncle may have had schizophrenia and you have ADHD.

I’m not ready to out myself and share my particular challenges, but like a lot of people, I see a psychiatrist. If you are a special needs parent, even if you were the mentally healthiest person in the universe before… not so much anymore, right? Did you know that stress levels of autism moms have been shown to mimic the effect of stress under combat? So often we ARE in combat – with the school, various therapists, family and friends that don’t understand, our partners, clueless and  judgey strangers and of course, sometimes, our child. Not you? Ok Mother Theresa.

When I’m under that kind of stress, plus a full-time job that I love but can sometimes mean excessive hours, I take my pills, and I march on. Because… say it with me now special needs parent warriors, this is our mantra… WHAT OTHER CHOICE DO WE REALLY HAVE? When your kid needs you, you find superhuman strength.

Boo goes back to school in one month. This summer though, it has been glorious. The nanny has been perfect, at all times, I couldn’t ask for more other than wishing she would go to school a bit closer to Los Angeles than Vermont and didn’t have to leave. We have a home instruction tutor who gets my son and pushes him academically. He respects his brain and what he can do and it’s amazing. Our local regional center gave him an ASD diagnosis, so although we have to wait a few more months, behavioral help is coming. We found a school, really! I’m nervous, for sure. It’s a “special” school for kids with behavioral problems. The rigidity of it is a little scary. Boo’s reaction to being notified there is a dress code that does not permit character tee shirts was less than fun and I can’t wait for the morning clothing fights to begin. He will be taking a school bus for the first time. But we liked it and ultimately you have to be able to take some leaps of faith. We shall see how it goes, but we are hopeful.

He has been taking basketball, tennis, art and piano. He complains all the time about this, like he didn’t pick the classes. He would spend 24/7 playing Minecraft lately if we allowed it. I have such a love/hate relationship with that game. He will at least continue with piano. The school district is in the middle of his speech assessment and other assessments have been planned for the fall. He has been sleeping better, he has been braver, and stunningly, we are figuring him out better and it has made life with him so, so much better. We are feeling our way around in the dark to discover some basic behavioral concepts that have dramatically cut down arguments. We have had a consistent, but low-key schedule. We have learned how to effectively ease transitions. HE MADE A FRIEND. He hasn’t had as many opportunities as we would like to practice “social skills,” but c’mon, Rome wasn’t built in a day and for the first time in three years of searching, advocating, crying, fighting, researching and most of all loving so deeply I walked around with a heart that felt so heavy sometimes I thought I couldn’t take another step -- I think, maybe, possibly, hopefully, prayerfully, we might just be on the right track.

It appears that the time has come for me to fall apart. I often have been known to do this during short-term and acute crisis. Get through it and then fall apart completely, my own sobbing, panicked, empty meltdown. I have been known to feel similarly after my wedding or a long-term, huge work project ends. I think actors often feel this way when a show ends… what do I do with myself now? Well apparently, the answer is I fell down a rabbit hole. I don’t enjoy the constant struggle, particularly in the last year. I should just be enjoying taking a breath. It’s not like I have rose-colored glasses on. New school or not, we all still have a long way to go. I know it’s coming. But it’s like I can’t stop worrying. I forgot how to simply rest. I might look like I'm resting, but honestly I'm just paralyzed sometimes. Everything is great, except me. Fear not dear reader, this too shall pass. But I wonder, does anyone else get so used to the stress that they are emotionally confused and unsure what to do during the good times? Has anyone else taken the role of warrior so seriously that their identity gets wrapped up in it and they don’t know what to do during peacetime? It’s not that I’m looking forward to the school year and intensive therapies and the IEP meetings. But change is hard, even when the change is good. Just as I figure out how to breathe again, duty will call and it will be a whole new world for us. Fingers crossed I figure out how to celebrate success a bit more and worry a bit less between now and then.

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Rykiel - July 20th, 2015 at 1:25 PM
Praying for a quieted heart for you, sweet friend as you navigate the upcoming changes, the peacetime, and the stresses.
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