Sweet. Funny. Smart. Determined. Athletic. Active. Vocal. Opinionated. Strong-Willed. Quick. Impulsive. Unafraid. Fearless. Feisty. Xander is many, many different things.
Tonight he is the reason I cannot yet go to sleep.
Last Friday something happened at school. For three years, I have honestly felt like the boys were in a great school with amazing teams around them. We've had some bumps along the way ... a kindergarten teacher we don't acknowledge, an abrupt change in afternoon dismissal, a field trip that left without us, some minor communication (or lack thereof) issues. But all in all, I honestly felt like the people who worked with our boys had their best interests at heart.
Friday I stood on the playground with my two boys, and that illusion cracked just a little.
One of my boys was being closely monitored by a special education para. For each step that he took, her eyes and her feet followed him. Even though I was there on the playground with him, she followed each place that he went. He was never out of her sight, and he was never more than a few feet away from her reach. He was safe, and so were the other students around him.
The first time I saw his twin brother, he was happily swinging as high as he could go at the other end of the swings. He was also noticeably, and conspicuously, missing his usual special education para. His para, the one who has been with him at recess every other time I have been at school the last two school years, was with another special education student. And while it would have been nice if someone had told me that there had been a change in staffing, that's not really the issue. The issue is that there was not another special education para in her place. The issue is that my son with autism was on an open playground without anyone watching him. He was on the swings by himself. And then he was jumping off the low concrete wall (which he is not supposed to do) by himself. And then he was on the monkey bars by himself. And then he was on another piece of playground equipment by himself.
I moved around with my other son and his para, just watching the events unfold. Perhaps I was mistaken, someone was with him and they were just further back. The trouble with that theory is that I am not a stranger to my boys' school. I know the special education paras. I know the special education students. I also know which para is typically with which student. That day there were four special education students on the playground, along with four special education paras. Not one of those paras was watching my son. Three of them were with other students, shadowing their every move to make sure they were kept safe. The fourth one was off to the side, standing on a sidewalk that separates the open playground from the front of the school and the busy road that runs in front of it. The only time that para left that spot was to assist another para who was struggling to contain another child who seemed gleeful in his attempts to escape. The fourth para, ostensibly the one who should have been watching my other son, was in fact assisting another para with a more difficult special education student.
I was concerned, to say the least. And I did what I usually do when I am concerned. I emailed members of Xander's school team, notably his primary teacher, his resource teacher and the special education facilitator who coordinates our IEP process. Xander's IEP clearly calls for environmental supports in the building and on the playground. While he typically does well with established routines, he is still an eight-year old child with autism who is incredibly impulsive and has a document lack of safety awareness. A child who will wander away to get a better view of his beloved mail truck or garbage truck. A child who would chase a bouncing ball into a parking lot or street. A child who wouldn't think twice about scaling to the very top of the playground equipment and trying to jump off just to see if he could. I wanted to make sure that Xander was being monitored during recess by someone.
And when the response came to me later that afternoon the illusion did not just crack, it shattered.
What I hoped the email response would say was "Xander had a substitute para that you didn't recognize who was watching him today" or "I'm sorry Xander was not properly monitored today" or "Let's see how we can make sure this does not happen again."
I didn't get any of those responses.
I was thanked for my concern. Perhaps that should mean something. But beyond that, the response was simply to dismiss my concerns. I was "assured" that Xander is monitored during this time, that monitors are aware of his possible wandering triggers, and that his safety is very important to them. Essentially, the legal points were covered, and the principal was copied on the transmission.
These are the people I entrust my verbal, but still very verbally challenged eight-year old to for seven hours each school day. These are the people I have always thought of as "Team Xander," as in the people who want what's best for my child and to help him succeed to the best of his abilities.
"Team Xander" did not respond. People interested in protecting themselves answered, and copied the principal for good measure.
That's okay. I copied them all on the response.
Xander may be a verbal child, but his functional skills are still limited. He has severe delays in both receptive and expressive language. For right now, I have to be his voice. I have to be his advocate. I can ask him a question, which he very likely will not be able to answer. He can't tell me when his normal para stopped watching him at recess and was moved to another child. He also can't tell me if another para really does watch him at recess.
But none of that truly matters in this case.
Because I was standing there on that playground.
Because I saw exactly what happened that day.
Another special education child with more severe behavior issues is getting additional supervision, and he's getting it at the expense of my child.
And that's where the illusion shatters. How long has this been going on? How many people knew about the staffing change? How many of them have I spoken to in the last few weeks (or maybe even months) who didn't think I had a right to know? How many days of recess has my busy, active and fearless boy been left to roam the playground at will without anyone's eyes truly watching him? Without anyone's footsteps close behind him to make sure not only that he was safe but the other students who were around him were also safe?
Their response praised his independence on the swings. It said nothing of who would be there to stop him when he decided to jump out of the swing from the top of the arc (something he routinely does at the park if someone doesn't advise him against it). Yes, their response pointed out that Xander has not wandered from the playground (we'll not ask his kindergarten para how many times she chased after him as he ran toward the nearby track between the school and the road). Their response pointed out they would work with him on not jumping off the concrete wall, which they suggested he'd seen a peer do (because clearly my child with autism who gets special services to facilitate peer interactions was interested in modeling his peers and not because he's been climbing and jumping off of things since the day he took his first steps). Their response hoped that they had addressed my concerns, told me I could get in touch if I wanted to discuss it further, and proceeded to wish me a nice weekend.
Their response made me angrier than I was as I stood there watching him on the playground. As I stood there, it could have just been an off day, a scheduling issue or a simple oversight. It could have been something that "Team Xander" could make sure didn't happen again.
Instead it was assurances that Xander was being monitored and that I was mistaken.
My second email, which came after several long hours of thought and deliberation, was pretty clear. I have neither visual nor mental deficiencies. I am, in fact, extremely intelligent and educated. I saw exactly what I saw. Four paras. Four students. Three watching individual students. The fourth assisting a problem child who I know all too well because he is in my other son's classroom. And that additional assistance was coming at the expense of one of my children. Xander's safety was compromised. How long it's been happening or how often it's happening, I can't tell you. But it happened on Friday. And their response does little to assure me that it's not been happening for longer than I'd care to know.
My second response included clear examples of safety issues we still currently face with Xander. Just because they have not seen it this year at school does not mean it's not an issue. I reminded them of a not to distant incident that happened in car line, in which Xander came out for afternoon dismissal to car line by himself, at which point he proceeded to run in front of my truck into the active traffic lane because an adult was not there (as they should have been) to supervise the transition. That response was very different, prompted immediate conversations and changes, and more along the lines of what I expected to hear Friday afternoon.
People have often told me because Xander functions with a higher level of autism that I would have to fight to make sure he kept his services. I honestly did not think we were at that point. He has clear impulse and safety issues. He has very clear language and social issues. His IEP is equally clear on transitional supports.
I honestly did not think that "Team Xander" would respond to me the way they did Friday afternoon.
Ask anyone who has ever worked with our boys in the school or therapy setting, and they will tell you that I am the parent you hope that you have. Everyone will tell you how well I know my boys and how valuable that knowledge is to making their jobs easier. I don't have unrealistic expectations when it comes to academic or IEP goals. I communicate about every issue that we have that may impact the boys at school, whether it's a rough sleep night that impacts a single day or a behavior problem we are working on in our private therapies. I ask if there are areas they would like us to work on at home or in our private therapies that would make school easier. I approach everything as a total team effort. I work with the boys on their homework every single night, even though most of it comes home unmodified and well beyond their actual level. I modify it. If I'm not sure how to teach it, I ask questions so that I can teach it. I show up for school events. I donate to fundraisers. I volunteer during Special Needs Awareness Week all week long. I send in school supplies and donate to parties. I bake homemade chocolate chip cookies and take them to school four or five times a year just to say thank you for all of the time and effort that I know goes into not only teaching, but reaching my boys. I usually even take them to our annual IEP meetings. I get Christmas gifts and end-of-year gifts.
I am that parent.
I do everything I possibly can to support my boys and the people who work with them. The only thing that I expect in return is that those people look after my child.
If you do not have a special needs child, you cannot possible imagine what it's like to send them off to school with total strangers each school year. You hope for some familiar faces, but there are always new ones. And you try to build an honest relationship, one that communicates both ways and only seeks to improve life for your child. You have to have that relationship and communication, because the two special needs children I send to school cannot yet talk for themselves, cannot tell me whether they are treated well at school or whether they are bullied or abused or unhappy. They cannot tell me if they are ever left alone or if something unsafe has happened to them. I have to rely on others to be their eyes and their voice. At the very least, I have to rely on them to keep my boys safe in the school environment.
I'm not sure I can ever look at any of those people the same way again.
Or that I will ever be that parent again.
Those people put the needs of another child over mine. Or, more honestly, they put their own needs over the needs of my child. For some, it was a problem child who required more help, and with tightening budgets and fewer hands, the simplest fix was to take something from my child and give it to another one. For others, it was looking the other way and not bothering to either speak up on Xander's behalf or let me know that a service was being denied to my child so that I could speak up for him.
All of those people involved, or least witnessing that decision, know me. They know all of my boys. And not one of them thought I should know it was happening. Instead they send me a carefully crafted response that tells me I am mistaken.
I now have a box of end-of-year teacher gifts that I'm not sure what to do with. I spent quite a bit of time, and not a little bit of money, putting them together. I expected to spend a day this week baking cookies and delivering gifts to close out what I thought was a pretty successful school year.
And there have been lots of steps forward for the boys, lots of progress and moments to celebrate and commend teachers and therapists and paras for jobs well done. Moments that are much harder to see right now as I think about what I witnessed on Friday afternoon.
I hope the part of me that wants to pick up each one of those gifts and hurl them against a brick wall calms down before the week arrives. I hope the response I get to my second email on Monday makes me want to at least drop them off at the front office, even if I don't particularly want to hand deliver them.
My sweet, busy, fearless boy. I thought he was well taken care of at school. I thought the people who worked with him cared about him enough to keep him safe, to be his voice and his advocate when I was not there.
Not to worry, my sweet boy. For as long as you need me, I will be your voice and I will be your advocate. If I have to be the parent who makes random visits to school every week or even every day, I will. If I have to the parent who brings a special needs attorney to every school meeting and IEP proceeding, I will. If I have to file formal complaints and go through due process, I'll do that, too. I'm not going to wait for a broken bone or an accident in the parking lot to make sure you are safe.
You and your brother deserve nothing less.