This winter has been a crazy mix of snow storms, frigid wind chills, mechanical problems, holidays, and lots of days off school. I feel like we have never gotten into a rhythm and we are less than a month from spring break! It is more than enough to make me feel a little crazy.
All in all, things are good, at least moving forward. It has been a huge relief to have left the public school system. We had so many battles with the public school last year, that I was terrified to send my vulnerable Owl there for kindergarten. So we opted for a local parochial school. Although we don't attend the particular church to which the school is connected, they have been very welcoming and inclusive. It is such a small environment that they are able to make accommodations for him in the classroom and keep him safe with his allergies. I pull him out for private therapies (didn't even want to deal with the public school special ed staff for him) and that makes a couple of his days shorter, so he is able to tolerate the full-day program. When issues come up, his teacher calls me and we come up with solutions together.
Herbie, on the other hand, really wanted to stay at the public school. He talked through it with us, what would change in terms of staff and the kids in his classroom, and said he wanted to give it a try. So in the fall, back he went. Right away, I worried if it was a mistake. He got sent home a few different days for throwing up at school and on the bus. He was not sick as soon as he got home, evidenced by his constant running through the house and jumping on the trampoline. He had several instances of collapsing on the floor in the sped room and saying he couldn't go back to class, so I would get called to pick him up. I left lots of messages for his case manager saying he needed some TLC, but all she was willing to work on involved following classroom rules, taking turns, and identifying emotions based on faces. Things he has been covering for 2 years, but it's easy for her to do and she can check off progress on her silly goals of success in 9 out of 10 opportunities to show recognition of emotions. How about what to do when you see someone displaying that emotion? Too hard, she said, as was my request for help in teaching him how to keep himself safe. He's too young for that sort of thing. Really? And to my constant pleas for some TLC to reduce his anxiety, the classroom teacher said the only person qualified to help with that was the school-based counselor, who happens to charge a hefty fee. We did end up paying for that service, and after several sessions, she asked me if we'd ever considered switching schools. Yes, we had, especially on the days when Herbie said he wanted to switch to his brother's school. Shortly after that, the classroom teacher said we should think long and hard about whether he should stay at that school. It became clear that in my son's particular case, his "individual education plan" meant something more like what they threw together to say they were meeting federal requirements, not to actually address his individual needs. I am at a loss to explain how we went from being thrilled with Herbie's school experience back in kindergarten to my son not being able to go to 2nd grade without throwing up, and no staff member there besides his para even caring?
So now I have 2 kids with autism at a tiny parochial school without any special ed resources. What they do have, is a commitment to care for the whole child. Not to refer each component of a child's development over to some other specialist, and then when there is no specialist to address an issue tell me I'm out of luck. The classroom teachers really care about the whole child. I expressed some surprise at this to Herbie's teacher and her response was just as surprised, it's my job, she said. We still have plenty of things to work through with the transition, but we have gone a whole month with no throwing up (yay!). He has gone to school every day that hasn't been cancelled. And on the days that have been cancelled, when we go outside to clear the driveway, my kids play together in the snow, nothing short of a miracle. Owl actually puts on all his snow gear, is able to move around in it, and is not afraid of the snow. The kids play together well (mostly), and when I say to stay where I can see them while I shovel, they actually do. I know plenty of parents just send their kids out to play and then they call for them to come in later, something I have never had the luxury of doing. They probably don't realize what a luxury it is that they have. But I get the extreme pleasure this winter of seeing my kids playing outside independently. I think other special needs parents will realize how incredibly exciting that is for me. Hooray for the rays of sunshine in the midst of our crazy life!
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 have had a hard time writing anything very thoughtful lately, not because I have nothing to write about, but because there is just too much, good and bad. Lots of physical therapy for the Owl (which is going well) and an official diagnosis of PDD-NOS (no surprise there), a great conference with the preschool teacher and some ironic recommendations (which perhaps merit a post if I get a chance), the world's worst IEP meeting for Herbie (I'm still getting over that one), a wise woman in my Arc support group bringing me back to reality (if you don't have a support group, I hope you can find one, it makes a world of difference), finally getting a diagnosis of sleep apnea for Herbie and a subsequent tonsillectomy and adenoidectomy (still in recovery), and add on top of that Thanksgiving and Christmas, my kids actually participating in the children's Christmas program at church (awesome!), and then wanting to participate in the Christmas Eve candlelight service by holding their own candles (against my better judgment but all went well), out-of-town visitors, and a few other things. Here we are already more than a week into January and I haven't even thought about it being a new year!
So my resolution is simple in principle, take care of myself. I just made a doctor's appointment for the first time since my almost-5-year-old was born (assuming I can't count flu shots at Walgreens or seeing someone at the walk-in clinic when I had strep). As soon as Herbie feels well enough to go back to school in a few days, I will be exercising on the elliptical trainer in our basement that has been gathering dust. I am going to go out with friends once a month, even if it's just to drink a cup of coffee, and my husband and I just scheduled a babysitter for a long-overdue date night a couple of weeks from now. When I think back to my pre-kid life, when I thought that I was oh-so-busy-with-important-things, it is sort of funny to look at my list above and think that is all I can come up with. But I am going to continue the investment of time in playing with my kids--just playing with no therapy goals sometimes--because that has been good for all of us this past year. So I think this is a do-able resolution, check back with me next year and see how I did!
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.
For years I feel like speech therapists have been telling me to work on greetings with the Owl. Say hello when you see him in the morning, say good bye when you go upstairs for a minute, intentionally greet everyone you interact with all day, prompt him to say these things, too, or at a minimum to wave. I went through spurts of heeding this advice. It gets old, so I admit that I'd given up on it lately because there are plenty of other things to think about. But all of the sudden, he is saying good-bye to everyone. His teachers at school, his buddies from social skills group, the receptionist at the OT clinic, even me when I just go upstairs for a minute. And it's not just one good bye, it's 7 or 8 in a row. It is super cute and made me stop to realize what a great achievement that is for him, especially after I had let it slide to the bottom of his list of goals. We still need to get him to say hello without maximum prompts, but I am inspired to really work on that again!
I am embarrassed to admit how often I end up yelling at my children. If any of my neighbors walked past my house at 8:30 a.m. any weekday, they would wonder what is going on. We do fine with the morning routine, of course there are reminders to brush teeth and all that, but everyone gets dressed and we theoretically have plenty of time to get Herbie ready for the bus. He'll play happily as he gets ready for his day. The problem starts when I ask him to get his shoes and socks on. I give reminders and tell him only a few more minutes playing, set a timer, etc. But when the time comes, it is complete meltdown time. There's always a bump in the sock that cannot be fixed, the socks go on and off, we try 4 different pairs, and then the bus pulls up. Thankfully, one advantage of riding the mini-bus is that the driver is ready for delays and waits for a few minutes. What on earth would we do if we had to be at the regular bus stop on time??
One day, after all my yelling about putting his socks on and all his yelling about not wanting bumps, the socks and shoes were on and I opened the door and hugged him good bye. Herbie just stood there, not going out to the bus. He took my hand and said, "you walk with me." We walked across the yard, up the bus steps, and he didn't let go of my hand until he sat in his seat. Then he smiled and said good bye.
After all my yelling, he just wanted me to hold his hand to the bus, his way of showing me he wasn't holding it against me, that he still wanted to be with me. When he got home, I gave him a big hug and thanked him for letting me hold his hand in the morning. He just smiled and lingered in the hug. The next morning went a little better, and again he grabbed my hand to walk to the bus. When the bus pulled up at the end of the day, he wasn't getting off, so I walked outside to see what was up. I got on the bus and then he stood up, grabbed my hand, and we walked inside. We have done this a few more times, here and there. It makes me smile, knowing that I always get another chance with him after I mess up, that he still wants to hold my hand.
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!
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.