At the end of March, an email notification popped up on my
phone and read “Need to schedule SOP meeting” which – being the neurotic person
I am immediately read as “Need to schedule SOS meeting” and was like… If this
is an emergency why aren’t you calling me?!?
I clicked on the email and discovered SOP was correct. SOP is a “summary of performance” meeting to review, well I honestly do not know what we are reviewing – the past 19 years he’s been in the school district? I don’t know. What it means is that this will be his very last day of school – ever – and we need to wrap up the formalities in one last meeting.
In Illinois, like many states, individuals with disabilities in special education can remain in school through their 21st year of life. Parker’s 21st year ends on Monday. On Tuesday, he turns 22, and everything changes.
I’ve battled, man have I ever battled for these past 19 years. Part of me is done and so ready for there to never ever be another IEP meeting again. I’m tired of fighting. I’m tired of pushing for the district to do what is right for my son to have the appropriate education and accommodations that he requires. It’s exhausting, mentally and emotionally exhausting. Even the good meetings with the best teams when everything is going right, they just drain you.
And, they define you. Without you even realizing it, they define you.
I honestly thought I had done a decent job. Until I saw this “SOP” meeting request. Suddenly every single fear that I’ve had pushed back in the very far part of my mind came rushing forward.
“Have I done enough?”
“Have I asked for the right things for him?”
“Did I push hard enough?”
“Did I give in too much?”
“What if I would have…. “
“What if I wouldn’t have…”
Literally, everything you can imagine I thought, and I started to panic. He isn’t ready. I need the school. All I know is the school. It’s all we’ve done for the past 19 years.
I immediately pulled his previous IEP, well IRLP because we’ve
been remote forever he’s had an “Individualized Remote Learning Plan” – so I
went back to his last actual in person, pre-covid, IEP and reviewed everything
we needed to put into place for his last year for this transition to be
successful and none of it has happened. Not one single part of it. Because it
couldn’t. It required him to be in person. It required him to be able
to be in the community. Things we couldn’t do because they were not allowed.
He missed every single transition opportunity he needed and deserved.
I sent the reminder that he needed his exit evaluation. Because, I enjoy torturing myself or I’m secretly psychotic, I’m not sure which – maybe both – because that was pure hell to read.
Reading the email chain that I am sure I was not supposed to be looped into… I do not feel like anyone went in with the intention of Parker doing well or with any expectations of him. But he did. His parapro went with him and he did what was expected of him. Did he give more? Heck no. There were zero expectations of him so he gave them the bare minimum. Then, I got the report.
If there is a new goal for me, it really needs to be to change the way reports are written and presented to parents, because it is brutal and it hurts.
I KNOW my son is intellectually delayed. I KNOW this. I don’t think about it 99% of the time because we are too busy living life but I’m aware of it. He’s 22. I tuck him into bed each night, I have to help wipe his bum, I do his cooking, our conversations are limited, and he yells at me way more than he should. He gets frustrated, he has meltdowns, he struggles with concepts. I’m totally aware of the fact that he is not at the same level as his 21 - 22-year-old peers. But, I don’t think about it.
I think about the fact that when he is running low on Gushers or Goldfish or pineapples, he pulls up the HyVee app on my phone and finds the food he wants, adds them to the cart, places the order, and schedules the pickup time. I think about the fact that he can do laundry better than most adults, and definitely more often. I think about his love for the Cubs, the love for the people he worked with, and the job he had. I think about his humor, his laugh, his strengths.
I know his weaknesses, I can’t focus only on them or I’d never get out of bed. Life is too hard for that. So when I get a report that scores him as “very low” or “extremely low” in every category, it is a sucker punch. It takes the wind from your sails.
I read that report multiple times. Every single time it crushed my soul. It sank my depression into a really rough place. How hard would it have been to include something positive in the report? How hard is it to think, “this is going to be really hard for parents to read, I’m going to include something nice.” Instead of just “let me be as brutally honest and as blunt and as harsh with reality as I can be?” Because, people, we know. We live this life. We know.
Instead of reading it and thinking, “We’re going to be ok” I read it and thought, “Holy shit, I have failed this kid in major ways.” Not the school. Not anyone else in his life. Me. I feel like I’ve failed him in every single way possible. This report was just so harsh, I’ve struggled to get past what I’ve read.
I’m getting there, I know that this compares him to other 21 – 22-year-olds. I know the differences there are. But, it’s hard.
And tomorrow will be harder.
Tomorrow I will drive him to school and drop him off there for the very last time. Tomorrow is the last, last day of school for him forever. And while he is there, we will have our SOP meeting and my expectations for it are not high. I think what bothers me the most is that there is nothing for me to say. There is nothing more to be done for this part of his life. Nothing.
And, honestly, without the last year and no preparations for Parker for what is next – he and I are both lost. There is no handbook in this special needs life. No one tells you how to make this work. I’m winging it. Just as I’ve been winging it for the past almost 22 years. I have a plan for Parker and in my head and on paper, it should work, but what if I’m wrong? What if he’s not ready? What if he’ll never be ready?
It’s a lot.
It’s a lot to let soak in. It’s a lot to process. It’s a lot to go through alone. It’s a lot to know others are going through it, too.
If you are, just remember, someone else is in your shoes, too. I am. I’m scared, too. I’m fighting the fear, the feelings of failure, the unknown of what’s ahead just like you.
And just like you, we’ll figure it out. We will. When we really stop and think about it we’ve made mistakes but we’ve never truly let our kids down and we won’t with this next part of our journey either. I’m not going to say it will be easy, nothing has been easy yet, but I will say we can do this.