Today was Moose’s last day in elementary school. He started at that school when he was just barely three, in the early childhood program. After almost three full years of that, a year of kindergarten, and grades one through six, he is done. It was a bittersweet day for me, and kind of a reverse of his very first day there almost 10 years ago, because I cried when I picked up him up instead of when I dropped him off. There have been ups and downs there, especially in this last year, but it was familiar. The junior high is uncharted territory, and while change is hard for everyone, for a child with special needs (and his mother), it is downright terrifying. He is an awesome young man, and I know he will do great, but it’s still challenging to go forward into this new world!
Today is the last day of Autism Awareness Month.
You may have noticed that I didn’t post anything about it this year. I didn’t mention Autism Awareness Day, I didn’t “Light It Up Blue,” nothing.
There are actually a few reasons.
First of all, I think I’ve said all I can say about Autism Awareness. Current statistics show that 1 in 59 children are identified as having an autism spectrum disorder. That’s an unbelievable number, and means that you probably know not just one, but at least several autistic individuals. People don’t need to just be made aware anymore…they need to move on to accepting autism and all that it entails.
Many therapies are designed to make autistic people “fit” into society. Sometimes, this is done to an extreme, where it does more harm than good to the individual. You can’t just make autism go away, and trying to mask it, to hide it, to make a person seem as though he or she is not autistic, denies part of who they are. There is a huge difference between teaching coping mechanisms, which help individuals function at times they feel beyond uncomfortable, and trying to force people into being someone they are not, someone they were never designed to be. I have never felt this more strongly than when reading this recent St. Louis Post-Dispatch article, which describes an Easterseals training session in such a way that it sounds more like training a dog than helping a person.
Even more than that, though, is the fact that I have come to understand the problems that autistic adults have with Autism Speaks, and by extension, events that organization has made popular, including “Light it Up Blue,” Autism Awareness, and the puzzle piece logo. Some of these people feel (rightly, I think) that Autism Speaks does not have their best interests at heart, and would choose to eradicate the condition altogether if possible. This is a hard topic, and one I have struggled with as a parent, but in the end, I know that autism is part of who my son is, and if he were not autistic, he would not be the young man I know and love. So how can I support an organization that would prefer to eliminate part of what makes him who he is?
I know this is a difficult subject, and one that people have very divided opinions on. My opinions on it have changed drastically over the last decade. But it an important subject, and deserves much more than lip service. We need to really think, not just about the fact that autistic people exist, but about how we’re treating them, and how we can make them feel accepted just the way they, without trying to force them into our neurotypical frameworks. So for now, I am more of a proponent of Autism Acceptance than anything else, because I know I want my son to be accepted just as he is, for who he is, because he is a unique, wonderful, interesting person, just the way he is!
Today was Moose’s Confirmation Day. He has worked so hard on memory work and sermon reports for the last two years, and has attended class faithfully every Thursday after school. We are so proud of him, and it was very exciting to see him confirm the faith that was given to him in his baptism, and receive the Sacrament of the Altar for the first time this morning!
In addition to being Confirmation Day, it was also World Autism Awareness Day. We made sure to have plenty of blue at our party, from the cake to the table runner, and even the plates and napkins. Many of our friends and family were able to join us, and it was a very fun time!
Moose was child number four to be confirmed…we’ll only celebrate this particular milestone one more time!
Moose’s Confirmation Day is rapidly approaching. I only wish that everyone in our congregation could know how hard he has worked to make it to this point.
I have some experience in the confirmation department, starting with the fact that I remember how much work my own confirmation classes, even though they were over 20 years ago now, were. I remember the sermon reports and memory work and service projects and classes…and I remember how much we complained about doing it all.
I have taught confirmation to two different grade levels at two different churches, as well. I got to hear the complaints about how much work it was, and how unfair it was that I expected so much, from the teacher’s point-of-view.
And more recently, I’ve helped four of my five children work their ways through a two-year catechesis program at our church. I have seen them each work, and sometimes struggle, and occasionally complain themselves as they went through the process.
I have never seen a student work as hard as Moose has.
When Turkey and Bunny began catechesis in 2010, at ages seven-and-a-half and six, respectively, it wasn’t without its challenges, mostly in the form of sermon reports. Their work was all over the place, literally and figuratively, and every week, I would sit down with them after church, and help them untangle their notes so they could turn in a completed sermon report that was both legible and coherent. Catechesis with children of such a young age is an adventure, but extra rewarding in its own way.
Ladybug had her own struggles when she began catechesis at age seven-and-a-half, again in the area of sermon reports. This time, the difficulty was mostly due to her dyslexia, and while her thoughts were fairly well-organized, her handwriting and spelling, especially at the beginning, were rough, although she worked really, really hard at it.
Moose actually tried to start catechesis with Ladybug in 2014, but he just wasn’t ready. So instead, he began his first year of class in 2015, just before he turned 10. He has had to fight every step of the way. The memory work, that came so easily to my other children, has been a major struggle for him. I think this is partly because I have always required the memorization of Bible verses, hymns, and poems in my homeschool, so the concept of memorizing the catechism was nothing new to his siblings. Moose, however, has never been required to do any memorization like that at his school, so it does not come naturally. And for someone who has struggled with speech, ever since he learned to speak, the physical act of saying the memory work has also been a huge challenge. He is determined, though, and has kept at it every week, even when it frustrated him (and to be honest, me as well, sometimes), and has faithfully said it every Thursday.
Sermon reports have been challenging for him in ways that were different from how they challenged his siblings. The physical act of writing isn’t easy for Moose, even though he has very nice handwriting and excellent spelling, and trying to keep up with a sermon is very difficult for him. Staying focused on one thing for so long, when there is so much else to look at in church, is also a huge challenge. Our pastor very kindly found a new kind of sermon report form partway through catechesis that made keeping up with them much easier for Moose, and he works very hard to fill one out most Sundays, but it still isn’t easy for him.
Even the act of attending catechesis has sometimes been a huge challenge. Neurotypical children struggle with paying attention to one more thing in the afternoon or evening following a long, often exhausting, day of school. Multiply that by, I don’t know, a zillion, and you can begin to understand how it has been for Moose. School can be an overwhelming place…bright, oftentimes loud, and draining socially. And then to go almost immediately to catechesis, where he has to continue to focus, and especially on days where he has things like book reports and standardized tests hanging over his head…I really wish there was a way for people to understand how draining that has been for him, but how diligent he has been in spite of it. There have been days where I’m not really sure he’s been paying attention in class (although he almost always is), and days where I’m sure he’d rather be anywhere else, but he has never complained about going. In fact, he always wants to make sure we get to church early, because he can’t stand the thought of being late to class.
So I wish that when he stands up there on April 2, in front of our congregation, and confirms his faith, and receives the Sacrament of the Altar for the first time, everyone in the church could know how hard he’s worked; how much harder it has been for him than for any other child I’ve ever known. I wish they could appreciate his dedication to studying the Catechism, and to doing all the things he needed to do. I want them to know how important doing this has been to him…he simply wouldn’t have done it at all if it wasn’t.
Confirmation Day, on April 2, falls on World Autism Awareness Day. This is a departure from our church’s regular Confirmation Day on Palm Sunday. There were scheduling conflicts that pushed it up a week, and I can only assume that God had a hand in that, and did it for Moose…allowing his Confirmation Day to fall on his day, a day where we already celebrate who he is because of and in spite of autism.
This evening I decided to stop at Walmart.
I know. I should have my head examined. Here we are, with an ice storm warning set to begin tomorrow, and last for over 48 hours, and I picked Walmart of all places to shop at. The best part is, I didn’t truly need anything. There were, however, a few things I wanted to pick up, and I knew Walmart was the only place I could find them.
So, Turkey and Moose and I went to Walmart after catechesis. It was as you would expect. The parking lot was a nightmare, there were few carts to be found, the snack and soda aisles were pretty much wiped clean, and the only thing that saved the milk coolers from the same fate was the fact that they were actively being restocked. The aisles were all backed up with carts, and there were traffic jams everywhere.
And then we got to the checkout lines.
I honestly don’t think I’ve ever seen them that bad, not even at Christmas. There were plenty of lines open, but they were all long. Fortunately, the shoppers, at least in the line we ended up in, were pretty good-natured, and we even had a nice conversation with the gentleman in front of us as we waited.
This was all a bit too much for Moose, however. It was the end of a long day for him, after school and catechesis. And our stopping meant dinner was going to be late, and even though he was prepared for it ahead of time, that didn’t mean he was too happy about it. Plus, Walmart on a quiet day is bright and loud and overwhelming, to say nothing of Walmart before a St. Louis Weather French Toast Event. So he was acting a bit squirrely by the time it was our turn to put our items on the belt and pay.
He was trying his best to help with the bagging process, but it wasn’t really working. And I was trying to just get him to stand still, out-of-the-way, so the checker could do his job as efficiently as possible.
I guess he must have sensed my concern, because the cashier, who was a fairly young man, very deliberately made eye contact with me. And with more mercy than I’m used to hearing, he said, “It’s OK. I don’t mind at all. Really.”
I was stunned. There was something about his tone, and the way he looked at me, that made me wonder if he had personal experience with autism. Maybe a younger brother, or a friend. And I wish I had stopped to tell him how much his kindness meant to me, but I was still flustered, and still hoping that we weren’t holding things up for the people behind us, so I didn’t. But it one of those moments that I won’t forget. That night before the ice storm, when an unlikely person showed me some much-needed mercy.
From time to time, I have shared about Moose and our journey with autism. Actually, I have shared about it from the very beginning, from the day of his diagnosis almost eight years ago when I thought my heart would break, when I couldn’t believe or accept the words the pediatric neurologist said to me.
Over the years, acceptance has come. I realized that the public school was a good place for him, that he needed help we couldn’t give him. But the acceptance wasn’t always complete. Until he was in third grade, I could keep the label “autism” off his school files, and I did. I didn’t want him labeled, didn’t want that to be his defining feature, all that his teachers saw him as.
This year, when I went to his IEP meeting, things were different. He’s doing so well in school that there was discussion about taking that label of autism off of his file. He could still have an IEP based on his need for continued speech therapy, but maybe they could take off the specific diagnosis.
That’s when I found my voice.
I told them in no uncertain terms that I did not want that label removed. Autism is a part of my son, good, bad, or indifferent. He is who is because of autism, or in spite of it, or intertwined with it. But it is a part of him, and his teachers, and the other professionals that work with him, should know and understand that.
That was a big moment from me. Afterward, I looked back at how much my attitude has changed; how much I’ve grown over the years. It can be a long, frustrating road at times. There are days when I hate autism and how difficult it can make life for my son. But it can also be an amazing journey, and there are also days when I realize that without autism, we would have missed out on some great moments. Whatever it is, it is part of our lives, part of who Moose is, and needs to be recognized and accepted, and even embraced.
I’m not going to lie. I have had some very hard days as an autism mom. Days when my heart breaks as I see Moose struggle with things that come naturally to other children. And on the really dark days, it’s very easy to blame myself for Moose’s troubles. You see, it seems that every time I turn around there’s a new theory out there as to what causes autism, as researchers desperately try to figure why this has become so prevalent in our society. And many of these theories blame the mother…something that was wrong with her, or something she did while pregnant.
My head knows that all these theories can’t possibly all be true, that people are grasping at any correlation they can find in hopes that they can identify the cause of autism and stop the spread of it. My brain knows that someday, they may actually find the cause and discover that it has nothing to do with any of the previous theories. But that sick feeling in my gut can’t help but blame myself on those dark days.
But. Thanks be to God! Those dark days don’t come around very often. Moose is a constant source of joy and endless surprises in my life, and those are the thoughts that take up most of my days. He’s smart, funny, and interesting. He works unbelievably hard, and also enjoys having fun. He is not a lost cause that has no future. He will find his place in the world in spite of his autism, or maybe even because of it. He loves numbers and is great at math…perhaps one day he will be an accountant. He also loves baseball, so maybe he will find joy as a statistician. He is quite talented at drawing, so he could find work as an illustrator. He has other focused interests, as well…yes, you could probably them obsessions, but they may hold the key to his future vocation.
Yes, there are hard days. But what parent doesn’t face the occasional hard day with each one of their children? There are times of blame and self-doubt, probably more than most parents of neuro-typical children have, but those days are the exception, not the rule. Tomorrow, science, or an over-zealous quack, may have a new reason that Moose’s autism is my fault, and even though I try not to, I may find out about it. I may even have a bad day, and wonder what I did wrong, and how I could have done it differently. But tomorrow is just one of many days, and tomorrow doesn’t dictate how I will live my life. Even if tomorrow is a bad day, the day after tomorrow will be a great one!
Today was World Autism Awareness Day, so we endeavored to “Light it up Blue” as much as possible. We even made some cool Autism Awareness bracelets in school yesterday. And we visited the Planetarium at the St. Louis Science Center tonight, to see it in blue.
It’s really such a small thing, but I like to think that today is Moose’s Day, and he really enjoyed our drive into the city to see the blue lights!
In December 2008, I shared Moose’s Story…the story of his evaluation and eventual diagnosis of autism, and the start of his school experience. I have shared lots about him here and there since then, but I figured a story like Moose’s deserved a follow-up.
Despite my reservations at the time (which, I guess were totally unfounded), he remained in the early childhood program at his school for the remainder of that school year, and then for another two full school years, having two amazing teachers, and several loving para-professionals help him. Things seemed slow at first…he started out as a three-year-old basically unable to speak, and it took over a year for that to change. Homework, at first, even simple things like counting and colors, was a challenge. But Moose is nothing if not a hard worker, and he kept at it, and eventually became so successful at all of it that we were having to tell him to stop talking, and his homework became boring because it was so easy for him. He even won a “Rising Star” award at his school, because of the progress he made!
At that point, he was ready to go to kindergarten, and we were very fortunate that his school also had a special ed class at that grade level, to ease the transition. He remained in a small group setting, with a wonderful teacher and more assistants, in familiar surroundings, but also had activities in which he was able to join with the “regular” kindergarten class. He continued to make progress, winning more awards, and talking to us more about school and his friends.
At the end of that year, it was decided that what would be best for him would to be mainstreamed. He would go to first grade at his school, with children he already knew, in a regular classroom. This was such a relief to us, to see how far he come, and know that he was able to do normal first grade work. He would continue to receive support, especially in speech and occupational therapy, but for the most part, he would be treated like any other first-grader. And again, he excelled. Homework was not a challenge, and his teacher constantly told us how much she loved having him in class.
He’s in third grade now, and that standard has remained pretty much the same in the past two years. He is at the top of his class academically, although he does struggle with figurative language in reading, which is totally normal for someone with autism, and not unexpected. He especially excels at math, which is completely effortless to him, and spelling…he was the alternate for the district spelling bee for his class last year! And his teachers still constantly tell us what a loving, special boy he is, which we, of course, already knew…but it’s always nice to hear it from someone else.
I still don’t know what the future holds for Moose, but that’s true for all of my children. I know he’s a smart, hard worker, a loving boy and good friend. I know from past experience that he can rise to any challenge, and surprise even us, the people who love and know him best, with his success. So I’ll be watching to see what he does next in his remaining years at the elementary school, and what surprises junior high will hold for us!