I asked the Owl yesterday what his kitchen would be like when he grows up. What would be in his refrigerator, cupboards, etc. His answer was fries, ice cream cones, and oreos. Not bad! I asked him if he would be the one making the oreos (we have never found any store-bought sandwich cookies that are safe for him). He said he would make them and let me eat them! Then I asked him what he would serve for dinner if I came to visit. He got very thoughtful and then responded, "hmmm, maybe something like fries and Plentils, and chocolate ice cream cones for dessert." (Plentils are lentil chips.) He grinned thinking about the prospect of having me as a guest for dinner. I'm looking forward to it!
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 had to use the Owl's epi pen a few days ago, for the first time. There were a couple of times in the past that I probably should have used it, but was too nervous and went to the ER instead. In light of all the news stories I seem to keep reading about kids who died because they didn't get epinephrine in time, I felt more confident about administering it this time around, and I am here to tell you, it is not hard at all.
The Owl was eating a favorite food that I believed to be safe, when he started to complain that it tasted bad. He gave some to me, and it tasted normal, so I questioned him a little more. He said his stomach was suddenly hurting, his neck was hurting, and his mouth was full of jelly. The combination of symptoms made me worried that it could progress quickly to something more serious, so I injected the epi pen into his thigh. It was exactly like using the trainer except for the fact that I had to keep my son from squirming away. He was screaming and mad at me, of course, but it was over quickly and we headed to the ER.
On the way to the ER, Herbie was crying hysterically that he didn't want his brother to die. While the Owl was just moaning and feeling sad about his shot, I was desperately trying to calm down Herbie. When we arrived, Herbie said he had terrible pain in his leg. He hopped on one leg through the parking lot, into the ER to the registration desk, to the triage nurse, and to the exam room where he collapsed in a chair. Wondering if I needed to have both my children examined, I questioned him about what exactly was hurting. He pointed to a spot on the outer thigh of his right leg where he said it hurt. The exact spot where I had injected the epinephrine on his brother. The pain seemed to subside when the doctor came in and evaluated the Owl, who got more medication, and by the time we left, he was fine.
The only way that I can think to explain it is an extreme case of empathy. His intense love for his brother gave him more intense empathy than I have ever experienced. Heartbreaking. Heartwarming. Amazing.
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
There is something therapeutic about cooking, at least for me. Perhaps because I love eating a little too much, and chocolate a lot too much. And also because it is so rewarding to make something that the Owl can eat, and does eat, and actually asks for more. So while I have a post sitting in my drafts folder about things I never thought I would be up against as a parent, I'm not sure about publishing it yet. I turn to chocolate and desserts instead.
For coffee hour at church several weeks ago, someone brought in a pan of those peanut butter rice crispy treats with chocolate frosting on top. I have noticed that kind of bar is really popular here in Minnesota, there are a lot of versions of them. The recipes vary, but they are full of gluten-containing cereal, of course peanut butter, and often butter, likely soy in the chocolate (since soy is in everything!), and clearly off-limits for my youngest son. He doesn't usually ask to eat anything at coffee hour, we always have safe snacks for him. But for whatever reason, he was really drawn to those bars and asked me to make a safe version for him. So we've been doing some experimenting at home--a dangerous thing because when we make a whole pan of bars that taste good but don't hold together, what is a person supposed do besides eat them? And then after finally making the perfect pan of bars, it is hard to resist eating even more. Now that I have the recipe mastered, we are planning to make more to share at church! If you haven't discovered No Nuts Golden Peabutter, I highly recommend it! If you are avoiding gluten, be careful not to buy the regular Rice Krispies, look for the gluten-free version that is often in the natural foods aisle. Or you could use Erewhon or another GF brand.
Peabutter & Chocolate Rice Krispy Treats
¾ cup sugar
1 cup agave nectar
1 ½ cups No Nuts Golden Peabutter
6 cups gluten-free Rice Krispies
10 oz. package Enjoy Life chocolate chips
¼ cup NoNuts Golden Peabutter
Heat sugar and agave in a saucepan over medium heat, stirring with a silicone spatula until sugar is fully dissolved. Add peabutter and stir until creamy. Remove from heat and mix in cereal. Press into a 9x13 pan greased with Spectrum palm shortening.
Add chocolate chips and additional peabutter to saucepan. Heat over low heat, stirring until mixture is a smooth liquid. Pour over the top of the bars in the pan and spread evenly.
Cool & eat!
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 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!
I was trying to think of something cheerful to blog about that didn't include any deep thinking. So what better than chocolate! One of my favorite things. This time of year brings so many goodies. If I'm going to over-eat, I might as well enjoy it. And it might as well be safe for my youngest son to be around me when I have sticky fingers. So I'll share my fudge recipe, super easy and very chocolately. It is allergy safe for all the top 8 allergens, plus our random list of other allergens.
3 ¾ c confectioners sugar, sifted
½ c unsweetened cocoa powder
Dash of cinnamon
¼ c coconut oil
¼ c coconut butter
¼ c So Delicious coconut milk
1 T vanilla extract
Grease an 8x8 pan.
Whisk together powdered sugar, cocoa and cinnamon.
Heat non-dairy milk, coconut oil, and coconut butter over low heat, stirring with a silicone spatula. Turn off heat, add vanilla. Pour in sugar mixture and blend well.
Pour into pan and allow to set in refrigerator for about an hour.
I write about living and loving life with food allergies, SPDs, ASDs, and PhDs.
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