Light it Up Blue

I always try to wear blue on World Autism Awareness Day. This year, I went with my blue harlequin print circle skirt from Pinup Girl Clothing, which has several gorgeous shades of blue. I also had plenty of blue accessories…my Starlite necklace from Meteor Jewelry, my Erstwilder bluebird brooch, and my new Duchess bangles from Splendette. I also painted my nails a fun shade of blue!

This year’s World Autism Awareness Day was extra special for us, since it was also Moose’s Confirmation Day, so I needed my outfit to be extra-special…and I really think I succeeded!

Confirmation Day!

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!

Some Thoughts on Confirmation Day

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.

Shining a Light on Autism

Today is World Autism Awareness Day, and, as always, I’m wearing lots of blue (including my freshly dyed hair) to “Light it up Blue” to shine a light on autism.

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Did you wear blue today?

World Autism Awareness Day

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!

Lighting it up Blue

Yesterday, I shared how we’re lighting up our home for Autism Awareness Day. Today, I’m lit up blue, too!

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It’s a little thing, but it makes me happy to do anything I can to show that I support my Moose!

Autism Isn’t Fair

I spent some time today outlining the ways autism can be a blessing in disguise. And I mean it. But, autism can also be extremely unfair, and I don’t want to pretend that those thing don’t exist.

It’s not fair the way people respond when they see a child with autism having a meltdown. It’s so easy, when you’re not in the trenches, to assume that said child is spoiled, or undisciplined, or simply a brat. It’s not fair that people stare, and say condescending things like, “Someone obviously needs a nap!” No, “someone” doesn’t. Maybe you do, though. “Someone” is overstimulated, or overwhelmed, or out of his comfort zone. Try to extend a little grace, and lessen up on the judgement, especially since it’s a situation about which you obviously know nothing!

It’s not fair the way parents, especially mothers, are blamed for their child having autism. Maybe if you hadn’t eaten that when you were pregnant… Maybe if you had been more loving… Maybe if you had never let him watch TV… Maybe if you hadn’t let him have those vaccinations… It’s not helpful. And none of those things have ever actually been proven. Again, less judgement and blaming, unless you want the stare of death from a tire, frustrated, overwhelmed mother.

It’s not fair that children with autism don’t quite “get it” socially, whether by their own choice (the loners), or because they’re excluded by their peers because of their difficulties. It’s not fair to see them by themselves on the playground, to know that they ate lunch alone, to see their struggles with making connections and friends.

It’s not fair that my child has to have a different education than his siblings do. This could be a public school vs. homseschool issue, as is the case in our family, or a private school vs. public school issue, or a specialized/residential school vs. public school issue. However it plays out, it’s not fair that not all children in a family can go to school together, because one of them requires special services/teachers/opportunities that are not available at the school that the majority attends.

It’s not fair to have a sibling with autism. No matter how much you love your autistic brother or sister, it can be a challenge to learn how to interact and play with him or her. Why does he get so upset when the littlest thing changes? Why does he get more attention? Why won’t he talk to me or play with me? It’s not easy to grow up next to somebody with so many idiosyncrasies.

It’s not fair to the person with autism, either. Probably most of all. Why should he be the one to be different? Why should he be the one to struggle to speak, to express himself, to engage others, to fit it. It’s not fair to realize that you’re the different one; that there’s something “wrong” with you. To know that everybody else is doing something different from you.

Autism isn’t fair. But, as the old saying goes, “life isn’t fair.” Sometimes it sucks, but it’s something a person, a family, a society, must learn to live with. Autism is on the rise, and until we figure out why, and how to prevent it, we must learn to look past “fair,” and learn how to deal with the struggles of everyday life.

Autism as a Blessing?

I mentioned earlier today, that in some ways, Moose’s autism has been a blessing. It has taught us to celebrate things that otherwise might seem insignificant, to not take anything for granted. We have also experienced the tremendous joy that comes from seeing your child go from a four-year-old with almost no verbal ability to a seven-year-old who can have conversations, tell jokes, and let you know when he’s sick or hurt,  just like any other child can.

Today, I had his annual review at the school (the irony of the timing is not lost on me!). After, I was talking to his occupational therapist. She has worked with him since day one at the school, when he was barely three years old. As a matter of fact, she is the last person that is still working with him that has been with him from the start. Next year, she’ll see him very infrequently, because he’s come so far, he really doesn’t need OT anymore. She’ll basically just be a consultant to the teacher, and an extra pair of eyes to check in on how he’s doing periodically.

I’ve long known that he’s a favorite student of hers…who could blame her? Moose is, after all, very sweet and funny and charming. But she told me today, with tears in her eyes, that Moose will always be the one student who makes her years as a therapist worth it, because of how far he’s come, and how much he’s achieved.

I realized at that moment, that Moose’s autism has been, in a weird way, a blessing to her, as well. Without it, she wouldn’t have had that career-defining experience, at least not with him; probably not at this time; maybe not at all. It’s strange to think that something we tend to see as a challenge at best, and a full disability at worst, could be a blessing in disguise to a variety of people.

I sometimes wonder how I would feel if they created a pill to “cure” autism. The easy answer is to grab it and run. Get rid of this invisible disability as fast as possible.

I’m not so sure I could do it, though. Part of who Moose is involves him having autism. I’m not sure who he’d be without it. Of course, no parent wants their child to suffer, but he’s not suffering as far as I can tell. And if him not having autism would take away from his sweet, loving personality, then I don’t think I’d want a cure. Autism doesn’t define Moose, but it is a part of who he is, and I love him just the way he is. I guess after all of these years of joys, triumphs, and, yes, struggles, I don’t want him to be any different!

A Crash Course on Autism

In honor of World Autism Awareness Day, here are a few things autism is NOT:

  • Autism is NOT the result of poor parenting.
  • Autism is NOT caused by “refrigerator mothers.” Sadly, there are still people, even in the mental health world, that continue to believe that this is true.
  • Autism is NOT caused by a lack of discipline…a good spanking will not “cure” my child of autism.
  • Autism is NOT caused by watching TV.
  • Autism is NOT contagious, so you don’t have to hurry away when you see an autistic child having a meltdown…your kid can’t catch it.
  • Autism is NOT a punishment from God…quite the contrary. At times, it can be a great blessing, because it helps you learn to appreciate even the smallest achievements as great successes!
  • Autism is NOT your fault.