Moving On to Happy

Because the last few posts have not been happy ones, I'm going to share some fun photos from last night's pool adventure. Grammy knew exactly what the boys and I needed to get our minds off of school and into summer. We joined her at the club pool for late afternoon swimming, eating dinner at the patio grill, and then staying late for the "swim in" movie.

After a long, hard week with a lot of big emotions it was exactly what we needed. If I've not said it before, Grammy is pretty awesome that way.

And just look at those smiles.

Moving Forward

Of all the things that have happened in the last few weeks, the one that's hardest to come to terms with is the loss of trust and comfort I had in dropping my boys off at school with a team that two weeks ago I would have told you was one of the best you could hope to have for your children. I thought they cared about both of our boys, who are both largely non-verbal and require a lot of support and supervision. I also thought that they would be the advocates they deserve to have in a building where they spend seven hours each school day. I truly believed that we were a team, working together each and every day to help our boys succeed. There have been so many positive and amazing moments in the last nearly three years.

How quickly it can all change ...

I honestly did not want to take my boys to school on Monday. Driving out of that parking lot was one of the hardest things I have ever done. It did not get easier on Tuesday or any other day that last week.

The incident happened on a Friday afternoon, one week before the end of the school year. My email response prompted a fairly quick email response from two of the three people to whom I had addressed my concern. And though perhaps not intended as such, that response came off as incredibly dismissive and even evasive. In fairness, it should also be noted that they both stayed late, one of them even returning to school from a grade-level planning conference off site, on a Friday afternoon in order to do so. Their response also came in the environment of severe district-wide budget cuts that will leave several staff members unemployed at the end of the school year.

Despite all of those things, the first and only response to my concerns should have been an apology, if not for the incident itself, at least for the fact that I had concerns and also a few statements that simply said we will look into what happened during the time in question and we will make sure that we respond to your concerns. Notice I don't even expect someone to validate my concerns at this point, particularly because the people to whom I expressed concerns were not present at the incident. A simple apology that I was concerned and confirmation that they would look into those concerns and get back to me is all that I truly expected.

My second email response, not a very happy one as I had felt dismissed in my initial concerns, was clear I wanted to discuss the issue further. I didn't get a response Monday morning, or Monday afternoon.

So Monday afternoon, I showed up at recess again to check on my boys.

Both Sawyer and Xander were at recess, both of them within feet of the paras who had previously been with them this school year during recess. Toward the very end of recess, Xander's classroom teacher came over to tell me that even though I had not yet had a response to my second email, they were working on one. She also offered to set up a face-to-face meeting. I stated that I did want a meeting, and that I wanted that meeting to take place prior to a walking field trip coming up in two days time. A meeting was very quickly arranged for the following afternoon to include me, the classroom teacher, the special education teacher and also the special education facilitator, the same three people I had initially emailed my concern. The principal, though copied on those subsequent emails by the school staff, apparently declined to attend, as I did pass her in the office at the conclusion of our meeting. She offered a brief "Hello" as I passed and nothing more.

The meeting itself was cordial and professional on their part. Mine may have been a little more hostile and emotional. It was, after all, the safety of my child we were there to discuss. I started the meeting with three main areas I wanted to discuss - the incident itself, the response to that incident, and how we move forward from here.

Some apologies were made that I had clearly been upset by the initial response, which was not their intent. Acknowledgements were made that my concerns were, in fact, valid concerns. Assurances were made that they also want what's best for Xander. And then the incident itself was discussed.

After some direct questioning, I was informed that the change took place in April of this year, with absolutely no notice to me that it was taking place. It's been happening two days every week since April, and I now have confirmation of exactly who was assigned to Xander during Friday's incident. My first response to asking who was responsible was met with what I expected, "We were not on the playground that day so we can't be sure." When I offered the names of the four special education paras who were present, a name was finally provided.

It was, as I suspected, the fourth para standing in one place assisting with another child, among other things that did not include watching Xander.

When I asked what training had taken place, there was a pause. I was then told that Xander's newly assigned para had been instructed verbally on how to supervise Xander during recess. "Several conversations" were apparently held. I'm not sure when or where, but I would guess it was on the playground as they were supposed to be watching Xander and not at a time when they could clearly be focused on the content of the conversation.

What makes this whole situation more difficult is that I personally know the aide who was supposed to be watching Xander last Friday. She has assisted with Sawyer in his classroom and within the school setting. But the reason I know her is that she is in Sawyer's classroom every single day, and has been for the last three school years. She knows Sawyer. She does not know Xander. She does not know Xander's IEP or his goals or behaviors or his concerns. Why would she? There is a reason we have always insisted on separate classrooms and teams for our boys. They are identical twins, and if you don't know them well, it's easy to assume that you know one just because you know the other. Many students and teachers who do not work directly with them confuse them by sight. They are, in fact, polar opposites in most ways. To know one of my twins is to know one of my twins. They are not interchangeable. They operate on two totally different levels of the autism spectrum.

I explained my discomfort at having a para who had never worked with him or known him being reassigned to him without my notice and with apparently so little training.

The issue of Xander's allergy-induced asthma and his emergency inhaler, which is at school, was brought up. It was stated that this reassigned para was not, in fact, aware of it. Instead, his regular classroom teacher kept it with her and would administer it. That's great, except for the days like last Friday when she was not there. And also, if the para assigned to watch him doesn't know to look for breathing problems, particularly in this awful allergy season, who's going to notice when he might need it? Even after they told me both a para and the regular classroom teacher were monitoring him, I explained that I did not expect his regular classroom teacher, who has twenty-plus children to monitor, to have constant eyes on Xander. They probably did not appreciate my further reference to having been on the playground multiple times and knowing exactly how the regular classroom teachers monitored recess, from sitting on picnic tables close the building and chatting with one another. Whether appreciated or not, any other parent or staff member on the playground at recess would confirm that truth.

I further explained that I expect a special education para to be watching Xander. And if his usual para is not going to be with him, if a new one is going to be assigned during certain times of the day, then I explained that more training should have occurred. I also offered that it would probably be helpful to have a "sub-plan" or "written document" on each special education child, so that you could easily provide it to each para who may be assigned to each child, whether it's for twenty minutes one time or twenty minutes each day or even each week. All special education children are not the same, and if you want them to have success in the school environment or any environment, then you need to make sure that every person who works with them knows and understands their basic goals, behaviors and concerns.

I also suggested, that in the future, it would be nice if Xander were informed of the change. Upon direct questioning, they told me that had never been done either. How is my child with autism to know who to approach if they have never taken the time to tell him that "Para X" is going to be watching you on "Days X and Y" the rest of the school year? A simple visual schedule for recess would have helped him understand who he should seek out if he needed help, whether that was obtaining a turn on the swings or going inside to use the restroom. Without that information or knowledge, he very likely would have just gone to his usual para, who was assigned to another child and couldn't take care of two students' needs simultaneously.

At one point in our discussion, it was further explained to me that the April decision had been made to go to a "zone" coverage at recess, that the goal was to give special education children more independence and more opportunities to interact naturally on the playground with peers, which they felt the immediate presence of a para with a child prohibited.

That explanation may have been satisfactory, had this discussion taken place prior to the change and allowed for my input. It may also have had more credibility, had that "zone" coverage on the day in question not looked like three "man-to-man" coverages for three children and "zone" for the one para whose eyes were not focused on Xander. She was far too busy assisting with a child with more severe behavior issues and also chatting with her daughter, who was standing there visiting with her on the playground that day. And, of course, the final confirmation to me that this "zone" coverage was not working or does not truly exist is that it has not been in place on the two days at which I was present for recess this last week of school. Now I could be wrong, but if one honestly felt "zone" coverage was appropriate for these children, would it not have been in place this week to demonstrate it's effectiveness and success to me? As it was, Xander's regular special education para was placed back with him, where she was never more than a few feet away from him as he moved throughout the playground.

To conclude our meeting, we also discussed moving forward. I was very clear to them that a significant breach of trust had occurred. The "team" had made a decision in April that seriously affected the safety of my child, and the "team" had not felt it necessary to ask for my input prior to the change or even notify me that a change had occurred. I told them that any future change, no matter how big or small, that had a direct impact on his safety absolutely required notification. I'm honestly shocked that the thought did not occur to them in April, because I am not what anyone would consider an uninvolved parent with my children. If a change is being made, I certainly want and expect to know about it.

Quite frankly, most of this entire issue comes down to a lack of communication and lack of proper planning and implementation. I clearly have no control over staffing issues. If you want to rotate your paras around to other students, that's completely up to the school to determine. If you feel like that benefits the special education children and gives you the staffing you need to meet all of their IEPs and their safety requirements, then that's clearly up to the school to make that decision.

But, you have an obligation to notify the parents of the children affected by such a change, particularly one that clearly involves the safety of children on a non-enclosed playground that borders two parking lots, one major road and two secondary roads. A "zone" coverage might be appropriate should you erect a fence around the playground, but probably not given the current playground location and the special education children who have the potential for wandering. If I had a child in kindergarten, I might even be concerned given my noted description of how classroom teachers tend to monitor recess.

You also have an obligation to properly train the people you are reassigning, particularly when they are going to be working with children they do not know. How can a para know what behaviors to watch for if they are assigned to a child they've never worked with? Xander likes to climb and jump from very high surfaces (well actually most surfaces). He's not above pushing a child out of his way to run past his favorite sign or go through the monkey bars. If a child accidentally bumps into him, he might respond with an even harder, more intentional hit back. He might be interested in something like a garbage truck or mail truck and leave the confines of the playground altogether. If he needs to use the bathroom, he's most likely not going to tell you if he doesn't know you, you just have to watch for his body movements. If he's having trouble breathing because of allergies or asthma, he's not going to walk over and tell you. He doesn't yet have those words or that level of understanding. If you don't know him, you don't know any of those things. This "zone" coverage might have even been more successful if you'd provided all four of those paras with clear instructions about all four of those students. But let's be honest, we all know that if the para reassigned to Xander was not properly trained (which they fully admitted was the case), they certainly did not cross-train all of the paras on all of the children.

Finally, you have an obligation to notify the children of the changes taking place. Many special education children thrive on routine and consistency. Both of mine certainly do, the one in question to a very rigid extent. If you reassign the only para a child has ever had for the year and don't bother to prepare or explain that reassignment to the child, then you're not doing your job. Even when you have a non-verbal child, or a child you think may not understand, an attempt needs to be made in their usual method (verbal, written, PECS, visual schedule, social story, etc.) to alert them to the change.

As I said, lack of communication, lack of planning and poor implementation.

I wish that I could say the issue has been addressed. I wish that I could say I am optimistic about next school year. Everyone said the right things in our meeting. But it's always actions that speak louder than words. The actions I saw this week were that once I expressed my concern, my child once again had his regular special education para back within feet of him at recess. Each special education child had a dedicated special education para following him or her around the playground. The "zone," if it ever existed, did not exist this week. As far as the the walking field trip, Xander had not one but two people monitoring him, and their plans and preparation and training (as they do not usually accompany him outside the building) for that trip were far more extensive and extensively shared than any previous field trip.

Perhaps they are simply trying hard to alleviate my concerns.

But trust, once broken, is not the same. And just as the first email response felt dismissive and evasive, the response I've seen this week seems to suggest they know they've done something to compromise my child's safety and now they're trying really hard to correct it because they know that I am very closely watching and evaluating.

I hate being this parent. I hate that I no longer feel comfortable leaving my children at school. And I hate that I have to worry about what happens at school when I'm not there. I hate that I felt it was necessary to check on my boys at school every single day this week. I hate that everyone I met at school this week either acted as though nothing at all had happened or went overboard in an effort to make me feel like Xander was being kept safe.

If the appropriate job had been done all along, the response would have been so much different. It would have been more along the lines of I'm sorry that you feel concerned, Para X was assigned to Xander Friday, and though I was not there that day she tells us that she witnessed X, Y, Z with Xander during recess. It would have explained why no one corrected him from jumping off the wall, an issue brought up only that morning by the principal on the school news, and also why she spent more time assisting another student and standing in one spot instead of moving around to keep Xander in her vision (even if it was going to be at a distance for this "zone" coverage). It would have further explained the "zone" coverage change, including when it first took place and why, and also what steps had been taken to ensure the safety of the children affected. And finally, it would have also looked the same when I appeared at school this week, because the people who made the decision to change coverage at recess truly believed it was the correct one.

Clearly not.

All I can do at this point is let it go. We're going to call it a bad end to what I thought was a pretty good school year. The boys and I are going to thoroughly enjoy our summer, where I know they will be closely monitored and supervised and safe. We will try to approach next school year with an open, if not more cautious, mind. And we will come in to our usual early orientation prepared with a clear list of our expectations for every single person in whose care our boys are placed next school year. Communication, which has been sorely lacking this year, will be more defined. Safety and behavior issues will be clearly addressed. If it cannot be done informally, it will be done with an early IEP meeting. I will try to meet them half-way so we can all make it through these next three years.

And, unfortunately, we will continue to very closely watch and make sure that our boys are indeed safe and well taken care of in their school environment. Because even though I hate being this parent, hate that I have been put in the position to make it necessary, I will still do absolutely anything that I have to do for my three boys. They deserve nothing less.

P.S. If you're wondering, as my mother did, if the school "teams" got their end-of-year gifts this year or if I threw them against that brick wall, they were given their gifts. It would have been the first time in five years of special education that I have not delivered end-of-year gifts, and I just couldn't do it Even though trust has been broken and I did not hand deliver many of them myself, they were placed on empty desks or delivered by my boys' hands. Despite the bad ending, there were many moments that could and should be celebrated, a thankfulness that should and does exist for time and effort and progress. As one of my friends reminded me, "Two wrongs do not make a right." You will, of course, have to forgive me if I did not manage to put together a bag of cookies for the para in question, who I now know was assigned to watch my child last Friday but very clearly was NOT WATCHING him. How she performed her assignment on the other 15 plus days that would have accumulated from April until the end of school, I can't tell you. But the fact that she was not there with him this week suggested it hadn't been done very well since they clearly did not want me to see it again. 

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 ...