Unringing the Bell

Sometimes it would be amazing to unhear or unsee something.  A chance at a do-over is the stuff of great novels and daydreams.  We all want to take something back and start over.  Sometimes it’s impossible.  Sometimes you can use the point where it all fell apart as a launch pad for something new and deeper.

The devastation I felt when my husband left me was traumatic but there is value in it.  I have learned so much about myself and I have found true joy in who I am.  There was a cost but I didn’t expect the payout to touch so many various areas of my life in such a ginormous and beautiful way.

In 2012 I was hospitalized with my last surrogate pregnancy for about a month.  At 25 weeks gestation, a regular check up with the neonatologist showed that my cervix started funneling and the twins were trying to come out. Well, more like my body wanted to force an eviction. I’ve always been blessed with fairly easy pregnancies and contractions I couldn’t feel until I was about ready to push. Why else would I be willing to be pregnant 6 times? I was planning a pedicure and Target trip that day but I was told to head straight to the emergency room. I couldn’t stop at home for my laptop or Kindle or even extra panties.  I was in a hospital bed from week 25 until week 29 when they were born.  They eventually left the hospital and then the country.  During that time I was on complete and total bedrest, and allowed to take one 5-minute timed shower while sitting.  The rest of the time I was stuck having nurses give me bed baths, and I spent a week in the trendelenburg position.  This means my bed was tilted so I was laying upside down at a 45 degree angle to keep gravity from doing what is natural.  I will always feel like I could have done things a little differently to keep them in longer and give them a stronger start in life.  I can see most would imagine I did enough, but believing there is always more to do and that I could do a better job is just who I am. I deal with it.  You should too.

This time of being forced away from my family reset things for me.  It gave me a do over. I realized that motherhood was a gift I was squandering in superficial ideals of what I should do and what I should be while my kids suffered my short temper because I couldn’t possibly do it all and be happy about it at the same time.  I came home and things changed.  I decided I would be the mother my children deserved, rather than the mother I wanted to be. I started putting their needs ahead of mine and the desire to whine about it settled into a version of peace for me.  I stopped feeling defeated because I felt what it was like to not be able to sleep with my kids near me and steal random hugs whenever I felt son sick and needed a refill.  I never imagined it as preparation for shared custody.  I saw it as patience when I needed it and compassion when they did.

In 2005, my oldest was 4 years old and nonverbal.  His pediatrician with too many letters behind her name told me he would talk when he was ready.  At the time I was a teacher’s aide at an elementary school and had a friendship with a speech therapist.  She suggested I ask the school district for an assessment.  His assessment was the same day as his first IEP.  I took him for the appointment and the team asked me to come back in a few hours and bring the whole family.

A few hours later I was there with the ex and our two boys.  They psychologist played with our kids on the floor while the rest of the team explained what autism is and that it was in our home.  They explained the characteristics to us and I right away made the connection that they were describing everything Kid2 does as well.  From the floor, the psychologist told us that in her professional opinion, Kid2 was also on the spectrum and his characteristics were more severe than Kid1.  Kid2 was still 2 years old and an official diagnosis wouldn’t come until later. Autism spectrum disorders can often look like normal toddler behavior and while it may seem like everyone has autism through some sort of connection, they really don’t like to hand out labels unless they have to.

My emotions were swiftly all over the place.  Before I left that meeting, I had cycled through the stages of grief (denial, anger, bargaining, depression) and I was at acceptance. Every thought and action for the next few years became, “But how do I help my boys?” I had to field the questions from family, making them feel better about what it was like for me to raise special needs kids because somehow the stigma affected them even though I was the one dealing with meltdowns and being a bad mother in the eyes of everyone around me.  It was a long time before I allowed myself to mourn the loss of expectations that were born with my kids and died in that meeting.  I would deny myself the freedom to revisit those stages and emotions because it wasn’t productive.  I would instead go through a moment of sensory integration messes like poopy painting on the walls and floor and beg others to envy me in snark and frustration, not realizing that there really are women that would give anything for the work I faced in place of the grief they felt.

There are fewer expectations and more pleasant surprises. I was told my middle son would never even say, “Mom.” I smile when he has long conversations about Nintendo or tells me how loved he feels.

My boys are still autistic.  That doesn’t go away or fade into the background.  It’s in our face with meltdowns from time to time. We do our part to make others autism aware, it just doesn’t look like stickers and ribbons.  I’m usually good at knowing where their limits are but I constantly remind them that they need to communicate their needs.  I don’t mind cutting a day short, but I mind knowing they pushed through a day of torture because they felt my needs were more important than theirs. I will always run the risk of a total melt down with violence if I try to change routines too drastically without plenty of warning and coaching along the way. The difference is they have learned ways to regulate how they feel and they have learned how they are expected to behave in society.  It’s not a perfect formula but it’s one we have all learned to work with.  At the same time, I am at peace with the idea that they prefer to be home at all times because it’s a routine they can predict.  It’s structure they crave and when they are calm, we all have peace.  That is until Kid3 has a meltdown. He doesn’t understand he’s not capable of competing with what his brothers have already done before he was born and the part of me he is poking with a stick has long since been broken and looks at him with pity and amusement.

Would I ever unring this bell?  Probably not.  Of course I’m Mom and would love to protect my children from every moment of suffering.  The reality is they are often blessedly oblivious to most social slights. I’m the one that sees more than I should and I may or may not have wanted to cut a kid because of it.

There are things about being a special needs mom I would never give up.  I’m an advocate.  I know how to fight for my kids.  I have.  I’ve won.  Fighting Like a Girl and Pulling Punches is all about what my kids have taught me. It has made me grow in patience and empathy.  I’m the person that won’t judge the mom with the crying child in a grocery store because I know that child is probably hungry, tired, uncomfortable and bored. I know that parent has been doing all they can think of to do for their children while doing what they need to do in order to take care of themselves and be the parents they want to be.  We all try to do what we think is best for our kids.   Being an autism mom has made me an optimist.  I will always look out for the best in a bad situation and find the silver lining because that is a necessity in the life we get to live.  We have to stay positive because it’s not just our joy on the line, but that of the children we are blessed with.  Their peace and sense of self comes from me.  I’m responsible for the inner voice that I’ve helped shape from their infancy. I’m responsible for their ability to navigate the world outside of our home and the thickness of skin that protects them from discrimination and aggression.

As for Kid1, he has the ability to see the world with a fresh perspective that takes each part separately and examines it carefully before putting it all back together.  He has a gift for art that is detailed because one of his superpower characteristics is to fixate on one thing to the point of mastery.  He amazes me with how he sees things and the specific diction with which he describes things.  One of his loves is my mashed potatoes.  He’s always called them “smashed potatoes” because that is what I’m doing when I make them.  (Not much in my kitchen came out of a box until recent months.)

Kid2 is completely guileless.  While he would love to lie, he’s often incapable of it. He has an open appreciation for affection.  He understands the value of a great big hug and snuggles that hold you up and together. He loves video games and will research and obsess over them. He’s passionate.  He will have moments of joy and laughter and moments of rage.  The only times he is apathetic is when he is experiencing a sensory overload and needs to reset with hugs, and a calming routine. Or when he’s being affectionate.

I’ve heard some lines about special needs parents being chosen.  I call BS on that.  The learning curve has been sharp for all of us, and we haven’t quit or died trying, so we’re doing okay.  But we’re far from the saintly.  We know how to live on call every moment and know that an emergency is seconds away at any given time.  We’ve been judged for our parenting and had our instincts go against professional opinions and we’ve been right. Given true respite where someone we trust has our kids, we can let loose and party harder than the average parent.  We know how to accept a break when it’s offered and we trust the person that has our kids.  At the same time, not everyone is trusted with our kids.  We’re not magical or unicorns, but we learn to choose our battles and let the small stuff slide.  The big stuff will be a bigger battle than you could imagine trying to bargain for.

Right now this first draft is being written with 9 year old Kid3 having a tantrum because I won’t allow him to eat Funyuns in my bed.  It’s been about an hour of crying, throwing things and slamming doors.  It’s part of his fallout when transitions between houses gets to him.  I’m at peace and ignoring him, except when he calms himself enough to talk clearly.  I respond calmly and talk to him at his level while speaking slightly lower than he does until he has begun to calm his voice.  I wouldn’t unring this bell.

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