I'm not sure if very many people are really following this blog, but to the few who are, I am sorry to have left you hanging for so long after such a downer of a post. The quick update is that things are good, actually. I talked to a counselor, and together Herbie and I have met several times with a very helpful psychologist. Every time I have left her office, I feel so much lighter and we are both smiling. We go out for coffee/juice or ice cream, and my son comments that he enjoys these "mama afternoons." I wonder if it is a good or a bad thing that our mother-son bonding involves psychology appointments. The school has been sort of horrible about implementing changes, but the great news is that the principal is leaving at the end of the year for another district. After praying so hard about where to place him for next year, we got the news and felt it was going to be OK to leave him at his current school, where he wants to stay because for the first time in his life he has a group of friends. I finally see my child back to his old carefree self, enjoying life, and in fact having almost no anxiety at all about school. I think that this whole ordeal is taking me longer to process, so I am trying to take my cues from him.

I am starting to finally relax during the school day. Herbie has been great about telling me more information about his day without worrying about how I might react. So the Owl and I have been able to get out and do fun things again while Herbie is at school. We went to the Arboretum a few days ago to enjoy the sunshine and it was quite therapeutic. The Owl really lives life at his own pace, taking his time to look at absolutely everything. So we stopped to read every sign, smell every flower, try out each bench, examine sticks, pick up pine cones, and chase geese. We checked in at all the usual spots, had a snack in the cafeteria, counted the plastic caterpillars in the conservatory, and sat in the library for awhile resting and reading about roses. After several hours, we may not have covered that much ground, but we sure saw a lot of amazing details, and my spirits were lifted.


 
 
The Wise Old Owl is completely obsessed with the Curious George soundtrack. As far as kids' music goes, it's pretty good. Not the annoying kind that you wish you didn't have to listen to. But seriously, anything starts to get old when you listen to it All. The. Time. Well, I have found an upside to his obsession.

Lately, he has started lip syncing to the songs. He doesn't actually sing along, but he is definitely lip syncing all of the words, even the faster songs. It is cute, he really gets into it and has some great facial expressions to go along with the lyrics. I watch him and I can see how if he were actually vocalizing, how he would be mispronouncing things. So I use it as a little bit of speech practice, cuing him to keep his tongue back for the "s" sound and all that, "singing" along with him while modeling proper form. Somehow it seems easier for him to form the words when he doesn't have to put the sound with it.

For a guy who struggles mightily with the rate of his speech--it usually takes awhile for him to form sentences and responses--it is fun to see him "singing" these up-tempo songs. And I am definitely glad that we are no longer in the days of tape players, where I would be spending quite a bit of time rewinding to find the beginnings of songs when a word is missed and the whole thing needs to be started again!

 
 
Every year I wonder who came up with all these Halloween traditions and why do we have to follow them? But every year we go through with the costumes and trick-or-treating and are rewarded with the joy of huge smiles and laughter from our kids.

This year, I volunteered at both of the boys' classroom parties. The amount of energy in those rooms is amazing, I was exhausted! The Owl was so giddy about wearing his costume, but Herbie, as usual, did not want to put his on, even though he had been excited for weeks leading up to the day and I had made sure to create something sensory friendly so it would not be unpleasant to wear. I coaxed him into it, and it was fun to see his transformation from feeling nervous and awkward to beaming with pride; every time a kid exclaimed that he had a cool costume, a little smile came over his face, getting bigger and bigger as more and more kids commented. I was particularly pleased that this year, both classes had candy-free parties, and none of the kids even seemed to miss the candy. They all know there will be plenty of candy to come from trick-or treating, so who needs it at school! 

They loved trick-or-treating, which is funny to me, since the Owl can't eat any of the candy and Herbie doesn't really like it. I guess it is just exciting to be given candy! Getting the Owl in and out of his wagon at every house was good exercise for me (justifying me eating some of that candy they didn't want anyway). It was irritating, though, to hear the number of people exclaim, "what did you say?" to the Owl when he said, "trick or treat!" Seriously, when a child in costume rings your doorbell on Halloween night, what else do you expect him to say?!?!?!? I know he gets frustrated when people don't understand him, but he really wanted to say "trick or treat" at every house. So he persisted, and the fun of the whole day kept him in a good mood despite people's stupidity.

We got home, dumped out the loot, from which I took a few favorite things and promptly gave the rest to the lucky group of kids who rang the doorbell at that moment. My boys raided the pantry for their favorite candy--Wintergreen Lifesavers--and I gave them each some Nana's No Gluten Ginger cookies, way better than any of that cheap candy anyway! And they went to bed happy and exhausted, counting down the days until they can do it all again.
 
 
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.
 
 
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.

 


 

Puzzling

02/06/2012

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Watching my children put together puzzles is an exercise in self-restraint. I thought that everyone started by finding the 4 corners, separating the edges and the middles, building the frame, and filling in the middle. Simple, right? Not my kids.
They like to look for pieces that they can match up right away, a section with words or a brightly colored spot. Once they find the pieces to put together that section of the picture, they build it out from there. Herbie does not mind my suggestions of building the frame; or if he finds a piece that does not fit in the area that he is working, it is OK to put it approximately where it looks like it will go, as a place holder. But his preference is to build from a starting point and go outwards.
The Wise Old Owl, on the other hand, gets a little upset at me for putting on pieces not right where he wants to work. He will in fact remove a piece that is too far from the central area where he is working. So I have to step back and watch. He usually builds from a corner and goes outward, completing the puzzle relatively quickly, but saving the last piece. He will push it firmly into the last spot, slightly turned so that it does not fit, declare that it does not fit, and hand it to me. Then he laughs as I put the last piece into place.
We do puzzles every day--maps, outer space, Curious George, cars and trucks. One day with the PCA, they set up 20 puzzles around the kitchen and hallway, wanting to leave them all together to admire their work. She laughed at how hard it was to not build the frame, letting them do the puzzles their way.
I wonder why it irks me that they do a puzzle differently. Their methods make total sense in their little minds and yet I feel like I have to correct them. Could it be that their different way of thinking is really an asset, a gift? When they are trying to solve puzzles in life, will their different perspective actually give them an advantage? While I insist on building the frame so I have a guide to build the picture, they can start with a small bit and create the picture without a frame. They do not need the framework that I need.
In life, I like to have a frame, a road map of sorts. What is the big picture? How does everything go together? I am troubled because I really do not know. My kids take it one piece at a time and build a beautiful picture. They live in the moment. What a lesson for me.