All The Reasons I Hate [This] Summer: A Memoir

School bells ring on the last day of school, and all children rejoice, while most working parents cringe. I’m a working mama and an autism mama, and like my Warrior Boy, I love a good routine. I get in the swing of things, and getting out of it makes me all twitchy inside. Summer typically doesn’t constitute too many changes, other than good ones: we travel more, play more, and celebrate more, with four family birthdays packed into one summer month, among other things. All in all, it’s usually not a bad deal. But then, my Warrior Boy usually attends ESY.

ESY= Extended School Year. It means that Warrior Boy gets to go to school for at least a few days per week, for most of the summer. It means he doesn’t completely lose his routine, his good behaviors, or his mind. He hasn’t missed a summer since his first year of school, when our Christmas present was finally getting him back to being himself. It was so awful, that the school made sure he didn’t miss another year. But as some of you may remember, we are with a new system this year.

When the new school system denied Warrior Boy his ESY, I cringed. I asked a lot of questions. I offered a lot of resistance. Much to my disappointment, I continued to receive the same answers: “We have concluded that it will take no more than six weeks to get him back into his routine” and “We don’t go by what the other school did” and “Our responsibility is what happens at school, not what goes on at home”. I tried to remain positive, thinking I would be able to find something else, but by the time I realized that they really believed all that junk, every available program was either full or affiliated with the school system.

Today marks the end of the seventh week that Warrior Boy has gone to work with me each day. Luckily my career involves working with individuals with special needs, or this wouldn’t be possible. Still and yet, it has been a slow, downward spiral. Sadly, I have watch my Warrior struggle, as we have battled that dreaded r-word, “regression”. I feel angry, frustrated, stressed out and sad. My boy, who is typically sweet-spirited and energetic, has become aggressive and uncontrollably hyper. He’s been distracted, easily triggered, and impossible to redirect. He spends most of his day shrieking, grunting, stomping, and throwing toys. Once almost meltdown-free, he now has one at least once per day, and we have to take frequent sensory breaks. These things don’t just happen when he goes with me to work; this also affects his home behavior and his relationship to his brother and sister.

I am heartbroken for him. He, along with his village of teachers, therapists, select family members, and dear friends, have worked unimaginably hard to get to where we were earlier in the year. And in working with autism, it is well-known among professionals that the focus should not be on one area or another, but rather, the whole child. And that focus should always strive to be consistent. So I would argue that the school’s decision for him to be excluded this summer, because they are only responsible for what happens at school, is fallacy at best. All the parts of his team have to work together and work consistently in all areas, or we fail. We fail him. And we fail others like him if it doesn’t improve.

So this season, which for many was sun and fun and good times, has mostly been stress and anxiety for me. And for my Warrior, it has been a withdrawal into a dark space – familiar, but unexpected. And unnecesary, if you ask me. Which is part of why the good moments haven’t been as good as the hard ones have been hard. And my sweet anticipation of vacation has turned to nervous anticipation of the coming school year. No matter what it brings, we will face it together – with an emphatic one-finger wave to this summer.

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Anxiety Is

Anxiety is…

Sneaking in to whisper “I love you” into each child’s ear for the 50th time, just in case it’s the last.

Endless thoughts of what will happen next, and when, and why, and how…

It’s asking God for forgiveness 500 times for the same thing, because you want to be sure.

It’s constantly worrying about your special needs child, because if something happens to you, he won’t understand.

It’s having night terrors at 30 years old, and waking up gasping for air.

It’s seeing the worst case scenario in your day dreams, instead of a white, sandy beach.

It’s spending the end of the day seeing wasted moments and broken hours, that could have and should have been spent more wisely.

It’s praying over your babies as if you will never pray over them again.

It’s writing these words at 1:17 a.m., because if you don’t, you may never get to write them.

Anxiety is the endless comma in the world’s longest run-on sentence, because a period is too final, and you’ve got more to say.

And what if you don’t get to say it?

Anxiety is a thief. Of joy. And peace. And love.

Because I have to get this done.

And it has to be this way.

And I don’t have enough time. 

And please forgive me.

Anxiety is not…

The answer. Or the ruler.

Or the end. 

 

Change is Good.

Change is hard.

Change is hard good.

Change is good.

This is my incessant mantra this week. These past few weeks have been beautiful and tough. Our family recently moved, unknowingly crossed that magical line dividing two counties, and everything has changed. Change is hard. We have a different address. Different utilities. Different commute. No big deal, right? Moving is stressful, in and of itself, but this move was necessary. And a huge step up in the world for our family. And I am SO thankful that we were able to make that step.

Different school system. That one took hold of us. Even for a typical child, changing schools is dramatic: new teachers, new friends, new routine. My son, however, has autism. The word change, in his world, is a big grizzly bear, snarling and slobbering and tearing apart the way we function. His school is a part of what I call his “team”: the professionals, teachers, physicians, and other people in our life that make his success possible. His previous teacher is a rock star, who loves my son dearly, and has become a good friend. His previous aides are caring and wonderful individuals. The progress he has made and the goals he has attained during the past two and a half years has been stunning. And he was supposed to be with this part of his team for one more year.

That magical line between the counties changed everything. All of a sudden we took on the dreaded status, “non-resident”, which might as well have been “leper”. The process to stay in the previous school system was tedious and time-consuming, finally ending in a decision to deny his placement. And though I fought the battle all the way to the state, I was reminded that because my boy and I “do not live in the county any longer, the school division is not under any duty…to your child”. I was devastated. His teacher and his aides were, also. And for a moment, it seemed the world would crash, along with all the progress he was planning to make, again, this year. The prognosis for the new school system was uncertain, at best, and I felt very uneasy.

Fast forward with me.

My boy started his first day at his new school on Monday morning. We had gone to meet his teacher and see his classroom on Friday evening, and while we were impressed, we were still anxious about the change. Would he feel comfortable here? Would he, if overwhelmed, begin to act out? To regress, even? Would he be as loved and well cared-for here, as before? When your child can’t verbally tell you about his struggles, or even how his day went, your mind reels with questions in an unknown routine. His first day was a little rocky, as was his second. But each afternoon, his teacher greeted me with a smile, a kind word, and positive thoughts for the day.

Then it happened. I picked him up yesterday afternoon, to find out that he had a “fabulous” day. His transitions were already improving, he worked well, and he was becoming comfortable with his surroundings. I am so thankful to know that he is adjusting so well. Change and transition are a natural part of life in this world, but they are not typically strong areas for my boy. To know that he is handling them with resilience and strength in this new chapter of our lives, gives me a more positive outlook for his future, and someday, his independence. For others, these small steps may be minor, even expected. For us, they are enormous in the joy, relief, and hope they hold.

I am still grieving the team we leave behind, but I am holding onto this new hope for what the future holds for my sweet boy. And I am writing this, in hopes of reaching out to those of you who may need this encouragement today. Even if things aren’t going as you planned, there is hope. Our babies are more resilient and strong than we may imagine. And, like us, sometimes they have to step away from the familiar, and out of their comfort zone, to find that strength.

Change can be good.

And we know that for those who love God all things work together for good, for those who are called according to his purpose.” Romans 8:28

Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.” Romans 5:3-5