Right now the Wise Old Owl is in a wheelchair with a broken leg. He is too young to be able to use crutches and needs some way to get around at preschool. It has been interesting to watch the reactions of others when they see him in a wheelchair. Kids always run right up to him and ask what happened. They often want to help him, push the wheelchair for him, etc. There is absolutely no discomfort. He gets lots of loving attention from people everywhere we go. It got me thinking about our comfort level, in general, with people who are disabled. In adults, usually there is some discomfort around an individual who is in a wheelchair or clearly has some sort of developmental disability. I grew up in a school where the special education kids arrived late, stayed out of sight, and left early. So I never learned as a kid how to interact with those who are different, it has come gradually through life experiences. With my kids, I appreciate when people speak to them (instead of me), show respect (instead of pity), and assume they can understand (rather than talking in a sappy voice). I love their inclusion classrooms, where all of the kids are mixed together and taught to get along. There are kids with permanent physical disabilities (unlike my son's temporary wheelchair) and they are part of the class. Young kids don't know any of the labels or medical terms, they just know each kid's name and that is enough. At what point does this acceptance and comfort level go away? Or won't it? I never had this kind of classroom as a child. So is it wishful thinking to hope that the kids who grow up with my kids and the other differently abled kids will just always know them for who they are and not worry about them being different? How wonderful that would be!

One of my favorite foods is pancakes. So I was happy to discover that it is also Nate the Great's favorite food, as the Wise Old Owl and I were reading the first book in the series. As the Owl flipped through the last pages of the book, he discovered a pancake recipe and got excited. It was a standard recipe, calling for such things as all-purpose flour, eggs, milk, and butter, which of course we never use. He wanted to know if we could make the recipe with sorghum flour. Then he scanned through the ingredients to see what else was in them. Sugar, baking powder, salt, all OK. He was sad to see it contained an egg, then remembered he could use an egg replacer. Milk was easy, he requested rice milk. He was stuck on the butter, but I suggested coconut oil and he cheerfully agreed. He really wanted Nate-the-Great pancakes for dinner. Rather than explaining to him why it might not work to drop in substitutes for so many ingredients and how gluten-free recipes need a mix of flours and things like xanthan gum, we just went ahead and made them they way he requested. (I added a scoop of ground chia seeds when he wasn't looking because, well I need to get protein into him somehow!) The first few pancakes were pretty flat, almost like crepes, but he gobbled them up. I added a pinch of baking soda and a splash of apple cider vinegar on the fly to puff them up. Then the rest of the pancakes got nice and bubbly and rose up like normal pancakes. And do you know what? They looked and tasted like regular old pancakes, the ones my dad made on Saturday mornings with all-purpose flour and milk and eggs and butter. The Owl dipped them in maple syrup (a new thing for him!) because Nate the Great likes maple syrup. So not that we were lacking options for pancakes, since I make them at least once a week and we have about a dozen different yummy recipes, but it was a fun little activity for us. I hope I can find a Nate the Great book where he says he likes meat or vegetables....

I had been so looking forward to the first week of school. We had a super fun summer, but it took a ton of energy out of me, and by the end of August, I needed some peace and quiet. Herbie started 1st grade right after Labor Day. He was nervous, he told me, since the kids in his class would be different. It all turned out to be fine, the kids are nice and the staff support is just what he needs. He'll definitely need some time to get used to a full day of school (last year was just mornings), but that will come.

The Wise Old Owl, on the other hand, was practically bursting at the seams with excitement about preschool. It was so fun to see the change from last year when he was very nervous about the kids. Whether it was progress from his therapy, chiropractic care, medication, social skills group, or just growing up, I don't know. I have been seeing such positive changes in him. He loved the first day of school. He didn't talk to the kids, but he also didn't avoid them. He enjoyed all of the activities and couldn't wait to go back. Well, the second day was not such a success. He fell a few feet from the middle of a slide and broke his leg in multiple places.

The pediatrician wanted him to see an orthopedist, so we got an ambulance ride to Children's. I suspect part of their decision to send us in an ambulance was her assessment that I was not emotionally fit to be driving downtown in traffic! Long story short, no surgery was needed, we spent the weekend watching lots of TV (Gilligan's Island is a new favorite around here!), and he got a full-leg cast on Monday.

There is still plenty of discomfort and sleepless nights, and lots of me questioning God as to why He couldn't prevent this from happening to a kid who already has a list of issues a mile long, some of which are going to suffer setbacks due to this cast. But today at preschool drop-off, I saw a glimmer of something positive that may come out of this. As he maneuvered his little wheelchair down the hall and into the classroom, all the kids ran up to him to see the unusual sight. They were asking question after question. And then, I heard him say, "I broke my leg. I fell off of the slide that doesn't have any sides." At pick-up, the teacher said she'd heard more of the same--multiple answers to kids in FULL SENTENCES! The autism specialist at school made a point to come find me to say she was impressed and had alerted the speech therapist to come listen in to him speaking to the other kids in the class.

More words than he probably said in total to all of the kids in his class the entire previous school year!

I get a good laugh every day out of my kids' re-enactments of Bill Nye the Science Guy episodes. Every time we go to the library, they pick 3 or 4 DVDs to check out. Herbie's favorite is "Spinning Things." Why am I not surprised? It's actually pretty hilarious. He has the whole thing memorized. Any time we go somewhere with a revolving door, they have to act out a scene from the DVD. We probably get a few strange looks, but I am laughing too hard to notice.

Do other little kids even know who Bill Nye is? Does anyone besides me get their jokes or understand why they add an enthusiastic "of science!" to the end of everything?

I have seen this quote shared on many blogs, and I'm going to share it here, too, because it is just so awesome.

“I know of nobody who is purely autistic, or purely neurotypical. Even God has some autistic moments, which is why the planets spin.”
― Jerry Newport, Your Life is Not a Label

Last summer, I remember stressing over who would be in Herbie's kindergarten class and who he would have for a teacher. Of course, I had only heard good things about all of the teachers, but still it is my nature to worry. After all was said and done, kindergarten was a huge success. He made great strides in so many areas and there were over a dozen staff members who knew him personally and so clearly cared for him. It was awesome. So at his spring IEP meeting, when the topic of placement came up, I was uncharacteristically relaxed. After the autism diagnosis way back when, I imagined myself becoming a parent with a plan all figured out. ("He needs to have this teacher, and be sure that these particular kids are in his class, etc.") I felt a lot of trust in the staff to place him in the best spot. A few days ago, we were notified of who his teacher would be for first grade, someone we have heard good things about. The group of kids in his class will be very different from his class last year, but the kids who will be familiar faces are all wonderful, in particular one sweet little boy that he loves to play with.

Today we popped in on his teacher, as she was setting up her classroom. We didn't have much time to talk, as we were coming from another meeting with the preschool teacher, but I was impressed with her in our brief conversation. We'll get a chance to talk more at the open house in a few days, but so far I am feeling great. We also ran into his former kindergarten teacher who was saying how we lucked out last year having such a small kindergarten class (15). She has 23 this year. It just reinforced my feeling that God is watching out for my little angels, making sure they are where they need to be and with the right people. I am holding on to that and feeling secure in my hope that first grade will be a great year.

The Owl's preschool class this year is in the primary school, and we met with the teacher and assistant today also, to go over his snacks and emergency action plan. It was a refresher after the long meeting we'd had in the spring, and mostly to drop off food and medicine. I thought it would be a quick meeting, 10 minutes or so, but we were there for over 30 minutes. (My kids, amazingly, played mostly quietly with the toys in the room and CLEANED UP AFTER THEMSELVES!!) The teachers had several questions for me and we had a wonderful conversation. What a gift that they are willing to spend the extra time on one student to keep him safe.

The month of August has been exciting, although exhausting. Whether it is the addition of the SSRI the Owl has started taking this summer, or the effects of the chiropractic care we have added to his list of treatments, or all the fresh air and playground time, he has been making progress. He talks more, he is more active (in spite of the fact that we quit PT for the summer while we are on the waiting list for a new clinic), he pedaled his bike halfway down the block (he previously could barely make it to the end of the driveway), and today he took a sip of chocolate coconut milk for the first time and ate another new food (an ice cream cone--no ice cream, but hey, it's something new!). Even better, our babysitter took the kids to the playground a few days ago while I got my haircut (yay!) and when I came home, she excitedly reported to me that at the playground when another kid came up and asked the Owl to play, he played with him!!

I wonder all the time what it means to let go of my cares, to allow God to shoulder the burdens. I still need to research therapies and practitioners, right? I need to figure out plans and social stories and new recipes and go to doctor's appointments. But this summer, I have prioritized playing with my kids, I have not spent as much time researching everything and analyzing every little detail. I've taken advice on supplements and medications from trusted practitioners without spending weeks on the internet evaluating every single option, and gone with referrals to new places without reading a million bios and googling all of my options. And I have more relaxed kids to show for it. It's not often that I can detail such results from my work, I usually work so hard and have nothing to show for it but a filthy house. But when I stepped back and worked less, I didn't mess up God's work, and He is much better at all this than I am!

So here's praying that my trust continues into the school year and I stay out of God's way while He does cool stuff. And that I am able to appreciate any progress as a gift. The Moravian Daily Texts that are emailed to me every day were particularly fitting for me today. As I am feeling so thankful, they remind me who these good gifts are from.

O give thanks to the Lord of lords, who alone does great wonders, for his steadfast love endures forever. Psalm 136:3,4
Every good thing given and every perfect gift is from above, coming down from the Father of lights. James 1:17

I frequently take my kids to a little local grocery store by the clinic they go to for speech & OT. It has a nice produce section and a handful of specialty foods that we can't find anywhere else. So if we've had a good day at therapy (actually, therapy is always good, it's the getting in and out of the car without running away from me part that is a challenge), and if they will both hold my hands the whole way to the store, then the reward is a walk across the street to pick out something to eat. Today, Herbie picked out 6 containers of his favorite hummus (and he will eat that all in about 4 days). The Owl picked up a couple of bags of fries. I got a few other things and we headed to the checkout. There was a big display of s'mores supplies right at the front. As I got into line, both of my boys saw it and simultaneously exploded into cheers of "Yeah! Yeah! Marshmallows! Yeah! Can we get some? Yeah! Yeah!" as they jumped up and down holding a bag of $0.99 marshmallows. Of course I got them, smiling at their enthusiasm. But the best part was the response of the man in line behind us. He was grinning from ear to ear and looked right at me chuckling and said, "that just made my day!"

My kids have these hilarious reactions to simple little things. They get a lot of joy out of the ordinary. Discovering a sprinkler head that they had never noticed at the playground, driving past a tornado siren we'd never seen before, finding a vending machine with Fritos, these are moments more joyful than you can imagine. How fun that someone else enjoyed their reaction today, too, and reminded me of how sweet it is that they find pleasure in unexpected places.

While my kids didn't quite understand what the Olympics were really about, we did have fun watching some of the events with them. Since most of it was on after they were in bed, we just recorded some events and watched bits of it here and there. That worked out fine since they would have never sat through all the stories and commentaries that proceed every big event. Herbie, in particular, was quite impressed with the trampoline event. If he were ever to be in the Olympics, that would definitely be his event! Highlights of swimming, diving, track & field events, and gymnastics were all hits. After it was over, Herbie said he wished that there was an event where people built domino courses and whoever had the one that took the longest to run would win. I thought that was an excellent idea! I've always loved watching dominoes fall, although I've never been good at setting them up. (Perhaps due to the fact that I drink too much coffee.) As Herbie was setting up his dominoes across the entire length of the kitchen, I reflected on the fact that just 6 months ago, when he started to be really interested in them, he couldn't set up more than a dozen without knocking them over. And due to my coffee addiction, I couldn't either... With some perseverance and a little time, he's a master of building domino courses. Hooray for his fine motor skills! And maybe someday we'll see him in the Olympics.

I think it is safe to say that parents of special-needs kids have gone through a huge range of emotions from sadness or anger about their child's diagnosis and the struggles that he faces, to joy over the simple things like saying "mama" or eating a new food. We question why our child, why this diagnosis, why don't others have to worry about these things. And then we feel feel intense pride and joy when we see our kid do something awesome or reflect on his heart of gold.

In a video lecture I watched recently, psychologist Ross Greene said that while parents of challenging kids may have more work cut out for them, they also get to go along on the ride with their children. While other parents are enjoying their child's accomplishments--some athletic achievement or winning a student council election or being a great artist, etc.--they are not as involved in the nitty-gritty day-to-day processes of learning any of these kinds of skills. With some encouragement and a good instructor, their kids just take off. In contrast, at our house, there is a lot of time spent on skills such as handwriting and chewing and learning how to introduce oneself to another child, among other things. So when the "sh" sound is properly pronounced for the first time or when one of my children writes his name legibly on a page, these are worthy of celebration. Parents of typical kids could celebrate these things, too, but they probably pass by unmarked because they are expected.

I have gotten to do quite a bit of celebrating with my kids. There are too many milestones to list--taking a vitamin, letting water get in his face in the shower, staying dry at night (every now and then it happens!), learning how to stick his tongue out, sitting still during church, hearing a passing dump truck honk its horn and not having a meltdown, coloring a picture mostly in the lines, alternating feet going up the stairs, playing with another kid at the playground, touching something wet. My husband and I jump around and cheer for these things, buy special treats and give big hugs. We appreciate the complexity of the neurological pathway that had to be formed to accomplish a feat, the anxiety that had to be overcome, the many months of therapy that led to the success. And we get to celebrate! It may sound trivial, but these are really special moments. Kids notice when parents invest time in helping them learn something and they enjoy being congratulated on a job well done.

Growing up, there were a lot of expectations for the kids in my family. Whether it was doing our homework, cleaning our rooms, doing chores, performing to the best of our abilities in extracurriculars, etc., we did it and moved on. Perhaps there was a pat on the back or recognition of something special. We definitely were not ignored or neglected.  But it feels so much different as I raise my own kids. I know them so well. They trust me to know when they need a hand, when it is not obvious to someone else that my son can't bend over to pick up a toy, or when one of them needs to hide his face in my shirt because of a particular smell. They know that I get what their limits are, that if they've had to focus for a long period on something and tolerated loud noises in a crowded place, then they just might need assistance if another challenge arises and their reserves have been used up. They know that I am there for them in the middle of the night. Or that I will help them calm down when someone bumps into them and no one gets why they are crying since they are not hurt. They don't often have to explain their reactions to me, and when they do, they know I am listening. I love the closeness that I have with my kids. I pray that I have the strength to continue to be a good listener and a shoulder to lean as the years pass and the challenges get more complicated.

If things came to them more easily, would I have put in as much effort to understand them? Their gifts, their fears, what makes them tick? It's hard to say, but it is easy to conceive that I might have taken many of their accomplishments for granted. So amidst all of the day-to-day work of raising these complicated kids, we get to celebrate pretty often. While my friends who are parents of typical kids don't get it when I excitedly proclaim that my youngest son took a bite of chocolate pudding, there are others who will jump up and cheer--friends, teachers, therapists, and our church family. And that is another huge blessing in itself, having those special people who can celebrate with us.

I have days where I wonder what I would change about my kids if I could change something. Would I get rid of allergies? Take away speech problems? Anxiety? Motor-planning problems? If I could pick one thing, which would I take away, what is the hardest thing? It's a pointless debate I have in my head, and I've learned to stop before I spend more than 30 seconds thinking about it. I can't choose the challenges my kids have to deal with any more than someone else gets to choose whether they get cancer or lose their job. If I could pick, I wouldn't allow any of these hardships. But the reality in this fallen world is that I don't get to pick. In eternity, the challenges will all be resolved. Until then, I'm on this ride with my kids. They are great travel companions and I am going to enjoy the journey with them.

 

It's that time of year when all the neighbor kids are going to summer camp, whether it is overnight or day camp or just the daily activities through our community ed program. I'm pretty sure my kids would not do well at any of those places, and they don't want to go anyway, so that's OK. I have looked at local options for day camps for kids with autism. But the high cost combined with the fact that my kids are pretty nervous about new places if I don't stay with them, made me rule those out. So we are left with VBS (vacation Bible school) at our church, and ESY (extended school year) through our district.

Our church recently held its VBS program, and my kids loved it. It was a small group of kids, in a familiar environment with lots of love. The junior high and high school kids did a great job helping out with the little ones, ALL of the snacks were allergen free, and when they made t-shirts, they even had a special spandex one for Herbie to decorate instead of the regular t-shirts. Wow! There were certainly some rocky moments during transitions and new activities, but we left every session in a great mood and looking forward to the next. What a blessing! The theme was "Shine God's Light" and I have to say that the teachers and older kids helping really did just that for my kids. Hopefully that lesson transferred to them, inspiring them to shine God's light in their own way.

Last week was the start of ESY. Both of my kids were a bit apprehensive about what it would be like. The Owl's ESY is at the same preschool facility where he went last year, with mostly the same group of special ed instructors. The big change was that he would be taking the bus. He has been asking to take the bus all year, but because of his allergies, I preferred to drive him. After talking with the bus company extensively, I felt like we could give it a try. So the first day came, and he suddenly realized he was actually going to take the bus, and he changed his mind. After all the phone calls and arrangements I had made for busing, I felt like we should at least try it once, so I coaxed him into getting on the bus. As soon as he was buckled in, he was grinning about his new adventure, and it went swimmingly! He kept his allergy alert bracelet on, sat in sight of the driver, and the driver had easy access to his medicine. After he came home, all he could talk about was the bus. Apparently he had fun at school, too, and the teacher called me to go over a few things, but the highlight was definitely the bus. Now he is excited for every bus ride, I wonder if I will have to let him ride it in the fall, too.

Herbie was a little nervous, but not hysterical like last year. He remembered that it was fun, but it had been a year, so if it were up to him, he would just stay home. It was a little different from last year, meeting at the high school first to have breakfast then walking (across an athletic field) to the nearby primary school for the rest of the morning (not his regular school, but the one in the district with air conditioning). He stayed 4 hours instead of 2 like last year. Apparently he loves it, because he got off the bus grinning and leaping across the yard to tell me how fun it was.

I know how hard it is to go somewhere that you don't know what exactly is going to happen. I have trouble with that myself. But these kids are so little, and they are getting on their buses and going off to the (sort-of) unknown, then coming home with huge smiles. I know it is hard for them to go off by themselves and work on difficult things (speech, social skills, behaviors--tough stuff for them), but they go knowing that the staff is going to take good care of them. Everyone from the bus drivers to the paras to the teachers makes them feel loved, so they can bravely go to school and come home super excited about going back. Hooray for the awesome special ed staff in our district! Supported by people who truly value and care for them (and have a lot of fantastic training!), my kids were able to overcome their fears and make huge strides.

I have been hearing a lot of "it's not fair" lately, exclusively from Herbie. It is usually regarding something to do with who has to take a shower first or who gets the first bedtime snuggle or the perception that his brother got more iPad time. I used to always try to make things like that relatively equal, keeping better track of whose turn it was to do certain desired or undesired activities first.

Now I am trying a different approach. The jury is still out on whether it is going to work, but keeping track of who got to go down the slide first when we were at the park three days ago is just not at the top of my list of things on which I want to spend my energy. When I hear Herbie protest the fairness of something, I ask him if he really wants his brother's life. Does he really want to be like his brother, without the ability to climb up on the monkey bars or jump high on the trampoline or to eat cake from a bakery? He gets that and the protest stops. But of course there is always another protest the next day. If I'm handing out tortilla chips and he thinks the Owl has one more than he does, I ask if he wants to always eat the same things as his brother, should I toss the goldfish crackers and never buy them again? I tell him that being "fair" does not necessarily mean making things exactly the same, but doing the right thing for each of my children. I wonder if I'm being a little unrealistic saying these things to a 6-year-old. And one who has had plenty of unfair things in his own life.

Meanwhile, the Owl has never once uttered the phrase "it's not fair." (I hope I am not jinxing myself here!) In fact, he is the one who goes shopping with me and wants to buy frozen pizza (that he can't eat) for his dad, freezer waffles (that he can't eat) for his brother, dark chocolate bars (that he can't eat) for me, and all kinds of treats for his family that he knows we enjoy. We get home and he announces the gifts that he has selected for everyone. (Never mind that it is my money that he is spending....) He is so excited to see the smile on his dad's face when he announces what he picked out for him. And if we are driving past an ice cream place, he'll quickly point it out to his brother and cheer because he knows how much his brother loves ice cream. He is truly happy when other people enjoy eating things that he will never get to have. I hope that his positive and generous attitude lasts forever!

I want both of my boys to appreciate all of the good things in their lives and to realize that the good outweighs the bad. Herbie gets to enjoy all kinds of fun activities and delicious foods, and when anyone talks to him about these things, he excitedly says that he is lucky. The Owl only eats from a very short list of food, but he jumps for joy when we prepare any of them. He gets home-made versions of lots of treats and is going to be an amazing cook when he grows up. I want them to remember their blessings and their loving friends and family when the worries of life get more complicated than oreos or turns at the playground.