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After what felt like an epic battle, my son now attends a different public school. Switching schools meant for my family switching philosophies. In order to get out of our terrible situation, we had to compromise. I allowed my son to enter a regional program for emotional behavior support or EBS. It is a segregated class to start and it totally broke my heart.

My son needed a change. I recognize that. He needed emotional behavioral support too. When some at his old school failed to see his behavior as deeper frustrations with curriculum, and more importantly failed to act, my son’s behavior and emotional stability fell apart. We needed to give him a new start.

Still being in a segregated class feels isolating. I’ve always been a part of school life. Suddenly I’m completely on the outside. Not only that, but there are times my son feels it too. He has even asked me if he was being punished for what happened at his old school.

The new school and I just finished formalizing a brand new IEP. It took over 4 hours. We rewrote old goals, but for the first time added academic goals now armed with assessments. I feel good about the work and hopeful for the future, but I will forever be cautious.

You see the old school didn’t insist on assessments. I did. The old school wasn’t seeking help from county special education services, I was. Did I know how to do any of this? NO! I hired someone to help me. This felt like a battle to get my son safe. I’m a fighter, but I shouldn’t have to be.

There are a lot of talk in forums, non-profits, and even within the county of providing training to parents to know their rights. I agree this is important. However, I fear we are putting too much responsibility on the parents. Parents who have special needs children. Parents who work. Parents who don’t sit at home writing blog posts in their spare time. When do we start putting the responsibility back on our school systems? When do they stop being reactive and start being proactive with the tools they have?

Since when did I have to know assessments, or what accommodations to ask for with curriculum? The parent rights handbook is filled with procedure rights and responsibilities, but is it a parent’s responsibility to request a Functional Behavior Assessment, when things start going south? Shouldn’t the school be doing these type of things? One shouldn’t have to have a hired gun at an IEP meeting to get services, or be some guru of special education.

What all this means is that we have a special education process steeped in privilege. We have kids who get services not because they need it the most, but because they have parents or hired professionals navigating the system. The schools should be the ones doing the navigating to get every single one of their students the best education possible. I’m only seeing this when things come to crisis or worse a lawsuit.

My question is why is this happening? Are teachers and administrators at local schools just unaware of what services the county and state will provide? Do local schools only see discipline issues and not underlying problems associated with disability? Is it time and resources? Just as important is my final question, what can we do about it?

As our family learns to navigate our new school I’m hopeful things are getting better for my son. We know much more now about how he learns and perceives the world around him. I hope this will help his teachers address problems in the classroom. I hope the school will be proactive if my child starts to show warning signs of escalating anxiety behaviors. I have hope, but I know I’m dealing with system that is more prone to war than peace.

It is difficult to put into words how isolating the holidays can be for autism families.  Everything is out of whack.  My child is overstimulated one moment, and then asked to roll with the unexpected the next.  It is a season of meltdowns and friends are few.

On Christmas Day my son in the midst of a breakdown on a city sidewalk declared,” Christmas is making me crazy.”   To be fair, it was the sugar, lack of a clear schedule and different environment, but all that encapsulates a fairly typical holiday for most of us.  For my son it feels anything but typical.  It also can make one feel isolated.  Why am I not enjoying this?  Everyone else seems to want me to be happy.  I know my son feels this, and quite frankly so do I.

I spent my holiday break on a constant vigil.  I was trying to keep track of how many cookies and sweets my child ate.  I was trying to figure out what to do to keep him occupied away from home and in an environment fairly foreign to him.  I was basically on meltdown watch 2018.

There is also a sense of  my own isolation.  I know others are participating in holiday events.  Many are too crowded for my family to enjoy.  Others  events we are simply not invited to join.  My son doesn’t have a social group.  We don’t have swim team friends, or soccer team friends.  He isn’t really interested in being around large groups of children.  One or two is fine, but there is anxiety in numbers.   When many social interactions as adults revolve around our children, the more isolated the child, the more isolated the parent as well.

As for my faith during the holidays, I have always been inspired by the verse in Luke that says, “But Mary treasured up all these things, pondering them in her heart.”  I don’t need a fancy church service or even nativity scenes to celebrate my faith.   Quite frankly the pageantry of church at this time of year can be dysregulating to my son.

Then end of school can be awful.  All my son can do is think about getting out of school.  The performances and the year end activities can send him into free fall.  Meanwhile, it can also make going back to school another day, or even returning after break that much harder.

Getting back to a routine never felt so good, as we enter a new year.  I’m not by any means recharged, but that’s OK.  I’m ready.  After tears and some self esteem help, so is my son.  Maybe next year I’ll just celebrate Festivus.

The first time I ever stepped into my son’s local public school was not to take a tour.  I didn’t even have a child yet.  The first time I walked into my son’s elementary school was to vote.  While using schools as polling places has met with resistance from parents and others recently, I consider it the perfect place to vote.

I’m not going to downplay parent’s fears.  I understand the world.  I’m not naive.  However, I think having schools as polling places is a positive thing.  Members at large who may not ever go to a public school, or have children get to interact with our space.  I wish I could label things purchased with PTA money, or donated by a teacher, but that might be going too far.  Still they might spot outdated laptops.  They might spot a leaky roof or a gym that is obviously too small to hold all the kids they see in the hallway.  Maybe if they spot a teacher they’ll remember a teacher’s march or article about low pay.

This year my PTA is having a bake sale.  It might sound ridiculously old fashioned, but I love the idea.  Voters will interact with school leaders.  Maybe they’ll make a connection. Maybe they’ll join our PTA and volunteer.  I hope they see vibrant and happy kids, because we have great public schools.  At the very least they might give just a little to our school and purchase a baked good.

So how do I address the real fear of school safety?  I believe that is done in the voting booth.  We don’t need to keep the public out of our school.  We just need to make a safer stronger society.  I believe we do that by electing officials that believe in gun sense legislation.  That entails stronger background checks.  That means the banning of military weapons in the hands of civilians.  Weapons like the AR-15.  I think we need to have a strong support staff, so we need legislators to step up and vote for better school funding.   We need more Teacher Assistants and better teacher ratios.  Most of all, we need counselors, school psychologist, and school nurses.

For those of you with kids attending a school that is also a polling place, embrace election day.  Talk about it with your kids.  If you haven’t voted yet, take your kids in to vote with you.  Most of all, think of the very building you stand in when you cast your ballot.

Going to a cookout for most families is nothing exciting.  For us, it can be a big deal.  First, my family is not invited out much.  Second I never know how my son will react.  He is getting better about being around little kids and tolerating other kids, but I know it can also be a struggle.  So this Saturday, I took a chance and decided to take a friend up on his invite.

My son went in actually excited.  To be honest, if he wasn’t excited I might have just stayed home.  I decided long ago that pushing social events on E is never a good idea.  When he says he’s not interested, he means it.  We got there a little late, thanks to a PTA meeting, but it did mean that the food was ready.

As usual, my son wasn’t interested in any food that was not easily recognizable.  He did manage some fruit and chips.  He seemed content.  The majority if not all the kids were in living room watching a movie.  E was invited to join them.  E refused and followed me outside to eat.

While my husband and I talked state politics, E was enthralled with something else.  The house was located near an airport and the planes were closer than they are at our house.  He loved it.  Every time a plane went above our heads he watched and smiled.

Later that evening with the adults circled around the grill, E got up and was running around the backyard.  He was basically acting out the book, Why Can’t I Fly.  He had a stick and told me maybe this could help me fly.  He smiled and continued to play happily.  When it got dark he started chasing fireflies as he ran across my friend’s backyard.

So maybe he didn’t make any friends that day.  He didn’t try any new foods.  However, my son had a wonderful evening chasing fireflies.  I can’t think of a better way to spend a summer evening.