Disillusioned & Angry

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.

Testing the Waters

For nearly two years, our twins have been following a gluten-free-casein free diet. It was a hard transition, particularly for two little boys who have always had issues with food textures and trying new things. But with so many people talking about the benefits they saw in their children with autism, we thought it was worth the try.

We started in the summer of 2012. We slowly let our supply of sugary cereals and food color dyed chips dwindle and disappear. We swapped Cinnamon Chex for Fruit Loops and Lucky Charms and Snyder's Gluten-Free Pretzels for Doritos and Cheetos. We started Gluten-Free Bisquick for pancakes, gluten-free bread crumbs for chicken nuggets or fried pork chops. We switched to dairy-free butter and yogurt and milk and ice cream. We gave up all but the most basic pasta, a gluten-free spaghetti that only Sawyer would eat. We gave up frozen pizzas for a gluten-free frozen crust we had to add just sauce and pepperoni and that only Sawyer would eat. Our grocery bill practically doubled, shopping at Whole Foods and in the organic sections of our local grocery stores.

We gave up every good restaurant you can imagine, and suddenly found ourselves hating even the thought of Chick-fil-a, Wendy's and Red Robin just because those were our only options for a whole family outing (though any gluten-free devotee will love all of them).

Twenty-two months. And we decided that was enough. We slowly started adding some foods back in. We started over Spring Break. And we didn't tell anyone on their school or therapy teams. We were hoping to get honest and unbiased feedback on their behavior, attention and overall demeanor once we started allowing gluten and casein back into their diets.

And ... nothing.

Every time I asked someone how the boys were doing, if they seemed a little off after the chaos of Spring Break or if they were having trouble getting back into routine and getting work done, I was told they were doing well. They were working hard, having some of their best days in reading and attending to work sessions. Eye contact was still amazing. And more than that, people were commenting on how happy they were, how many smiles and giggles they were seeing.

Our boys have always been happy. But I think they lost some of that when they went to the gluten-free-casein-free diet. And who can blame them. The food, for the most part, is bland and tasteless. There's no joy in pancakes with no taste. There's no smile for a piece of bread that's hard and tasteless. There's no happy in yogurt that smells like something rotten.

So here, we are, nearly a month after the slow re-introduction. I've seen some differences. Sawyer, in particular, displays a little more stim behavior. The hands wave a little more, and that vocal stim is even more pronounced, particularly during meal times.

But I don't know whether it's from a reaction to the food ingredients, or just an overall joy of enjoying food again. And the truth is, right now, I just don't care. They're eight years old. They're kids who want to eat what their peers and the rest of their family are eating. Their teachers and therapists, unbeknownst to them, gave us the go ahead by not reporting any adverse behaviors or issues at school or therapy. Their smiles, so much brighter and more often, say it all.

Our decision is in no way meant to influence anyone else. I still believe the diet can have benefits for some kids (or adults). I applaud parents who keep at it regardless of how hard it is to find recipes that are tasty and ingredients that don't break your grocery budget. But for our family, we're going to move away from the strict diet and find a compromise. I'm going to keep some of the things the boys like (the gluten-free pretzels, waffles and cookies). I'm going to give up the things they didn't (the almond milk, the almond milk yogurt and ice cream, the really expensive and frozen gluten-free bread). I'm going to let them have things with gluten that they've missed, like bread and chips, and things they like with milk like real yogurt and ice cream.

Within reason.

You see, for our boys, impulse control is a big issue. Sawyer would absolutely sit down and eat an entire loaf of bread or a whole box of Goldfish if you'd let him. I'll never forget him locking himself in the pantry the summer we started the diet, stuffing as many Cheez-its into his mouth as he could before we could stop him. Xander would eat an entire bag of Doritos every single day if you'd let him. He's done it a couple of times already, just because it made me so happy to see him excited to eat food again. Watching him eat a slice of real Sir Pizza, and say "Mmm ... yummy!" after every bite, was pretty great, too.

So we're going for a good mix of gluten and non-gluten foods. And we're going for acceptable portions. You can have two pieces of bread with a meal. You cannot have eight pieces of bread and not eat anything else.

So that's where we are right now. Like so many things, we're still figuring it out as we go. All I know is that I'd much rather have two happy little boys who may or may not stim a little bit more, rather than watch them pick at food that's expensive and doesn't taste good, and watch sadly as the rest of the world around them eats things they once were able to have but had to give up. We have more important battles to fight than Sawyer waving his arms a little more often, or Xander asking for Doritos every single day.

Easter Weekend

As usual, holiday weekends involve a lot of travel to see several different sides of the family. Our adventures began on Saturday, when we left bright and early to make the three hour drive to the western part of the state. The boys were all sleepy, of course. On the plus side, it was a beautiful Spring morning, made even more beautiful by all the big flowering trees that line our old neighborhood streets. It looked like it was raining through the sunlight, even though it was just white petals blowing in the wind (and unfortunately my cell phone camera did not do it full justice) ...

So our first Easter celebration began. Easter lunch included fish, which is apparently an old family tradition. Connor sampled and enjoyed it, but as I'm not a seafood fan, I went for the ham instead. Sawyer was with me on that, he tried to eat the whole platter of ham before we cut him off. Xander was his usual picky self and didn't eat much of anything. After visiting with family, the boys got to go outside for an Easter egg hunt on the farm.

We made it home late Saturday night and tried to get some rest for our adventures on Sunday. We slept in. Okay, I slept in, after the boys saw what the Easter Bunny had delivered and went on an egg hunt around the house for even more candy that none of us really need.

Next, we made our way to Grammy and Pappy's house for our second Easter celebration. A big lunch with more ham, another hit with Sawyer, followed by a really, really big Easter egg hunt (as in over 300 eggs). There are more grandkids at this one, so lots of little baskets to fill.

There was also some kite flying, or attempted kite flying, as the wind wasn't exactly cooperative. Xander, however, was determined and did indeed fly a kite for a good hour, after which he was wheezing (combination of allergies and asthma) and exhausted.

We wrapped up our second day early, as Daddy had to go back to work at the fire station (he had taken several hours off during his shift to attend). A busy weekend, but a good one, too ...

Back to Soccer

The Spring soccer season has started.

Xander is more impressed than Sawyer. Both boys moved up to the next team, slightly older kids with more capabilities. Instead of doing drills for the entire hour of practice, they now drill for the first half and scrimmage for the second half.

Xander LOVES the scrimmage part. He may or may not have pushed kids out of the way, screamed loudly in their faces, or otherwise scared them away from him and ball so that he could score. Ten goals. Yes, really. Ten goals. Did I mention that he LOVED it?

So our Sunday afternoons are now back to soccer for a few months. Soccer first, then french fries, of course.

Spring Break

It was a busy but fun week for the boys.

Connor, our have suitcase will travel kid, left on Saturday and headed to the lake with Grandma and Grandpa for the week. He was in for a surprise adventure. As a kid, I'd always loved going to Land Between the Lakes and watching the big boats go through the locks on the river. Grandma and Grandpa made plans to take Connor there for a few days. They hadn't planned on the lock being under major construction and inaccessible to the public. Clearly it's been a while since I was a kid, and we were there. They still had a good time. Connor got to swim at the indoor pool at the hotel. He got to see big boats on the river. He even got to throw rocks into the river.

The twins and I stayed home early in the week to continue their regular speech and occupational therapies. We also made some spontaneous plans to visit the zoo. We've never taken the twins there, and Grammy and Pappy volunteered to help.

The animals were not a big hit. Xander was pretty clear with his "No animals!" commentary. We also avoided the indoor exhibits, because quite frankly we picked the worst possible day to take the twins. It was a beautiful day, both sunny and warm, in our part of the world. And like our boys, most of the state was on Spring Break. We got backed up on the interstate just trying to get there. It took 45 minutes to go maybe three miles. And then there was parking, and the lines, and the sheer amount of people there.

Despite that, the boys did remarkably well. We made our way around the entire zoo. We saw most of the major animal exhibits. The boys enjoyed the water exhibits the most, especially the seals and the ducks. 

We ended our day with a ride on the train, which was the highlight of Xander's day. He LOVED stopping to watch the train any time we saw it during the day.

At the end of the week, the boys and I traveled to join Connor at Grandma and Grandpa's cabin at the lake. We even took a day trip to explore parts of the lake that I've never seen before from land (the big dam and one of the state parks on the other side of the lake). 

We got to toss rocks into the river below the dam.

We even got to see two of the big marinas from an overlook. 

The boys and Grandma were all ready to end the day before me and Grandpa, but we eventually made it back to the cabin!

And now we're back into our normal routine of school and therapy and after school activities.

The rest of the zoo photos are here. Connor's trip photos are here. The rest of our lake photos are here.