So last year, I made a number of resolutions that turned out to be absolutely crucial to my sanity. Little did I know all the craziness in store for me, shortly after I made them. We had some foreshadowing of it, with intense anxiety in Herbie and suicidal thoughts. I felt like I needed to take better care of myself in order to take care of him. So I checked something off my to-do list that had been there for years--find a primary care doctor and address my own anxieties. When the root cause of my son's behaviors and anxieties was discovered, I plummeted, but had the tools to pull out of it faster and in a more healthy way than I had been able to process any previous distress in the past. Which was somewhat miraculous considering the magnitude of what we went through.
I have spent a lot of time sitting and playing with my kids. Carving out one-on-one time with each of them when I can has been immensely rewarding. I gave up on getting them to consistently sleep in their own beds. I don't mind that they always want me to snuggle with them to help them fall asleep, that is when we have some of the best heart-to-heart conversations.
I have utilized the services of our babysitter for monthly dates. I joined the church choir (although I am a delinquent when it comes to attending rehearsals regularly, they kindly allow me to participate anyway). I have coffee with friends and nights out with other mom friends reasonably often.
The resolution from last year (and every year...) that I have completely neglected is exercise...so maybe I'll make some progress on that one in 2014, seeing as how far I've come with the others!
We still have plenty of daily struggles and big issues to deal with, but I have to say that I don't feel completely paralyzed by them anymore. There are days when I am overwhelmed and exhausted, but I no longer spend the majority of my time in such days, more often than not I feel like I am in a good place, ready to tackle the challenges of the day. Seeing how much stronger we are after what we've been through helps me to continue on into the unknown. One step at a time, knowing that God walks with us, and that He will get us through whatever craziness is in store, just like He got us through the last year.

 
 
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.


 
 
I'm in a fog, I consume a pot of coffee every morning but my body still feels lethargic. I alternate between crying uncontrollably and feeling totally numb. I remember the days of the various diagnoses--allergies, apraxia, autism--I cried and then sprung into action researching what could be done. This is different. I don't have any idea what can be done when my child's innocence has been taken away. When I finally see some of the root cause of his anxiety and acting out. The helpless feeling of not having protected him. The guilt from sending him to school when he asked to stay home. The anger hearing the principal say somehow it was partially his fault for not speaking up at the first instance. I hadn't wanted to tell anyone, would they judge me for not protecting him? Would they try to give too much unwanted advice? Does anyone really want to know such upsetting things, anyway, except to make themselves feel better about their own lives?

I went to church, thinking that worship would be a good thing, it might help me snap out of my funk. But I could hardly keep from crying the instant I walked in the door. It's one thing to go out in public and see people, answer their, "how are you?" with a simple, "fine." They don't really want to know how you are, it's just a greeting. I can plaster a smile on my face while at the grocery store. But at church, when people ask how I am doing, they really do care, they give hugs and pray with me. It seems like something I would want. But I couldn't go through with it. I hid in the Sunday school room with Herbie and listened to church through the P.A. system, wondering why I had even come. My husband went into the church with the Owl, who never wants to miss it.

I tried to stay calm for the sake of my son. I listened to the sermon while he did word finds and puzzles. The text for the message was about the "foolishness" of the cross, how what we perceive as God's foolishness is wiser than our wisdom. The pastor asked everyone to picture the most expensive piano they could think of. The bulletin had a picture of John Lennon's piano, on which he wrote Imagine, which sold at auction for $2 million. Our life is like that piano, comprised of so many intricate parts, keys, strings, it's complicated. Then he asked us to picture a crane lifting that piano up to an apartment window, but something goes wrong and the piano falls to the ground and is smashed to bits. Like our life sometimes. Like Christ on the cross. And then God sits down at that piano and starts to play an amazing piece of music.

As the music director started to softly play Imagine, the tears poured out like a waterfall. But it finally felt like release rather than sorrow, a glimmer of hope instead of hopelessness. I cannot hear it yet, but God is going to bring a beautiful piece of music out of what I thought was a broken instrument. And I am clinging to that hope.

18 For the message of the cross is foolishness to those who are perishing, but to us who are being saved it is the power of God.
19 For it is written:“I will destroy the wisdom of the wise;
    the intelligence of the intelligent I will frustrate.”

20 Where is the wise person? Where is the teacher of the law? Where is the philosopher of this age? Has not God made foolish the wisdom of the world? 21 For since in the wisdom of God the world through its wisdom did not know him, God was pleased through the foolishness of what was preached to save those who believe. 22 Jews demand signs and Greeks look for wisdom, 23 but we preach Christ crucified: a stumbling block to Jews and foolishness to Gentiles, 24 but to those whom God has called, both Jews and Greeks, Christ the power of God and the wisdom of God. 25 For the foolishness of God is wiser than human wisdom, and the weakness of God is stronger than human strength.

26 Brothers and sisters, think of what you were when you were called. Not many of you were wise by human standards; not many were influential; not many were of noble birth. 27 But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong. 28 God chose the lowly things of this world and the despised things—and the things that are not—to nullify the things that are, 29 so that no one may boast before him. 30 It is because of him that you are in Christ Jesus, who has become for us wisdom from God—that is, our righteousness, holiness and redemption. 31 Therefore, as it is written: “Let the one who boasts boast in the Lord.”


1 Corinthians 1:18-31


 
 
I think that God has been trying to get my attention recently. (Well, He's probably been doing that for a long time but I'm just noticing it in a new way right now.) I've been pretty stressed about school stuff and my loss of trust in Herbie's case manager. I've been thinking about Owl and kindergarten next year. (Why does that come up so early, really? The school should stop sending me paperwork for that until I am ready.) Anyway, suffice it to say that I have had some days where I am really on edge, dropping things, snapping unnecessarily, etc. One particular day when I was cooking dinner in a bad mood, Herbie came over and put a piece of paper on top of my cookbook. It read, "I can nevr stop loveing you." He smiled, gave me a hug, and walked away. How did he know how much I needed that?
At bedtime lately, my kids profess their love almost like a contest. They say things like, "I'll always love you even if you're lost in the desert,"and the other replies with, "I'll always love you even if you're in a volcano." I got the best compliment from Herbie the other day, who said, "I love you more than the i-pad!" Wow, that's big time. :)
So when I get lost in my thoughts and wonder how God is going to get me out of the worries that consume me, He answers me through my children.
 
 
I've been thinking about a lot of things since the tragedy last Friday. There's shock, sadness, anger, etc. Wondering why the media gets so many facts wrong. Realizing more than ever our need for the Light of the World, whose birth we will celebrate in a few days.

I can't come up with much of a post about this, so instead I'll point you to a beautiful statement that I just read. Have some tissues handy.

Statement from the family of Josephine Gay

 
 
It has been six weeks since the Wise Old Owl broke his leg. He initially had a full-leg cast. Then, eleven days ago, he got his cast off and switched to a walking boot. Give it a few days, the orthopedist said, he'll be running around, they always get right back into action. I tried to explain that he had a motor planning disorder and I wasn't so sure, but she was very confident. This is the problem of seeing a specialist who is only looking at one aspect of my child. Although we've been in the facility for an hour and a half, we only get 10 minutes with the orthopedist. All she knows about is bones, not motor planning. So off we were whisked with our walking boot. Eleven days later, he's still not walking.

I've been playing phone tag with the clinic all week. Finally, we got a walker today. I requested it to help him transition from the wheelchair to using his legs again. The nurse on the phone initially sounded concerned that he would need more x-rays and evaluations, kids always walk after getting their casts off. Didn't you hear me say he needed intensive PT to learn how to walk in the first place? Even with absolutely nothing physically wrong with him? She thinks perhaps there is something wrong in how it has healed. Of course I can't say for sure that there is not, but I what I think I really need is someone to help me teach him how to walk. So she says she'll write up orders for the walker so our insurance will cover it, but to call in a week if he's not walking.

So now we have a walker. Who knew they made them so small?? A friend saw it and suggested we put some tennis balls on it, helping me find humor in the midst of my frustration. He seems to like the walker, he managed it pretty well at the library and Walgreens. So we are on the road to re-learning to walk, finally. But I am still wondering, why this huge set-back? He had made such tremendous progress in his motor skills, and now we are back 3 years, or that's what it feels like. I hope the trade-off in improved social skills was worth it. But right now I can't stop thinking that keeping up with all the kids on the playground helps with social skills, too.

Note: I typically leave posts in my draft box for awhile before hitting publish. So after I wrote this, I suddenly found myself humming a song by Sixpence None the Richer - the one called "Trust." It's stuck in my head, probably not by accident. So that is the answer to my worries, He's got it under control. I think I'll go find the CD of that song, which I haven't listened to in years, it's a good one. The song is based on Proverbs 3:5-6:

Trust in the Lord with all your heart,
    and do not lean on your own understanding.
In all your ways acknowledge him,
    and he will make straight your paths.

Do not lean on your own understanding...easier said than done, but here goes.
 

Trust

08/27/2012

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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 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.

 
 
We had a lovely day on Sunday with the exception of some rain that sort of ruined the outdoor portion of our Father's Day plans. Although, playing at home when I am not solely in charge of the kids is just fine with me.

It started out a little hectic, as it always seems to be so hard to get out the door at a specific time for anything, including church. And when we slipped in the back, our usual row was taken. Fortunately Herbie was in a good mood and fine with being in the very last row. That turned out to be a good thing, because the next thing you know, he asked for a snack and as I tried to open a little package of animal crackers, it absolutely exploded everywhere. I guess it was just comic relief for the folks in front of us.

Once we were actually settled down, he did great. He even went up front for the children's message and sat in one place and didn't roll around or start any antics requiring me to go sit with him. I was so proud and gave him a huge hug as he sat down. During the fellowship hour, an older gentleman came up to me and said how he enjoyed seeing Herbie growing up, that he was so impressed how well he paid attention during the children's message. It blessed my heart to know another person was proud of that accomplishment, too, and sought me out to tell me. And so I am praying that I, too, will notice things about other people and tell them something that can encourage them. We all need to hear that sort of thing!