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Wednesday, October 24, 2012

Snippets of Quirky

As Fall has started, the kids have needed to wear sweatshirts or light jackets to school in the morning. Ben has run out of sweatshirts at home, because he forgets them every day at school. He has borrowed Jonah's. And forgotten Jonah's. I finally told Ben this week that he was wearing the very last size 10 sweatshirt in the house, and if he wanted to stay warm at the bus stop in the mornings, he needed to bring his collection of sweatshirts home from school.

He just got off the bus carrying an armful of EIGHT sweatshirts. Which is a lot when you're a skinny little guy like Ben. He could hardly see over his load of cotton. It was so funny, I stood on the porch and laughed so hard I'm sure the whole neighborhood heard me. I hadn't realized how many sweatshirts  Ben had been keeping at school, and to see him tottering up the driveway carrying them all was more than my funny bone could bear.

As Aidan ate his after-school-cookie that he had requested I bake today, he started talking about nicknames. He asked about each of our family members, and whether they have "real" nicknames or not. Like "Ben" is a real nickname for "Benjamin." Most of us do not have real nicknames, we decided. Then Aidan asked about God. Does God have nicknames? I said well, what do you think? Can you think of any other names for God? We thought of lots of names that God is called, and Aidan's face lit up as he said "God has a LOT of nicknames!" For some reason, Aidan brings God and/or Michael Jackson into most important conversations. Ever since Michael Jackson's death, Aidan has let us know at every opportunity how he will see Michael when he goes to Heaven. How he loves Michael Jackson. How he can dance like Michael Jackson. How he's sure Michael Jackson liked certain things that Aidan likes. And Aidan's only 6, so he didn't know of Michael Jackson very long before his death, so I'm not sure what the fascination is.

Aidan is a funny kid. You sometimes think not much is going on in his very bright mind because he seems a little disengaged. Then he'll ask you something like "Mommy, does our conscience make us think thoughts?" Hm. Not sure about that. Maybe you can ask Michael Jackson when you get to Heaven.

You'll be driving along, lost in your own thoughts, and Aidan will strike up a conversation about God. "God is everywhere" he will declare. "God knows what we think about." "God is my best friend." "Where does God live?" "Where is Heaven?" "Is Michael Jackson for sure in Heaven with God?"

We are a religious family, but Aidan comes up with questions that he thinks up on his own. They're not possibly things he's discussed in Sunday School or heard about at church. He has ideas that none of our other kids have come up with, regarding Heaven and God. And Michael Jackson.

Now Ella is following suit. I can see her mind expanding. I can see glints of imagination lighting up. The other day she informed me that God wears pants. And also that Heaven is far far far away. I argued that I believe Heaven is all around us, not up in the sky or far away. She disagrees. I'm not sure where she gets her information, but it's worth considering. Who am I to disagree about God wearing pants when I have never seen God in person? Maybe Ella's right, who knows.

I love exploring my children's world through their eyes. I love the funny, crazy things they say. A few weeks ago, I was upset with Ben for something, and I was talking loudly and adamantly (aka yelling, but that's such an ugly word) with him. In the middle of this heated discussion with my son, Ella came up to me, hugged my leg and looked sweetly up at me. Then she said "I luf you Mommy. Does that make you happy?" Gulp. I made myself calm down immediately and said "Yes, that makes me very happy. I love you too." Then I continued to deal with Ben in a calmer manner. My three-year-old is capable of reminding me to be calm. Kind. Compassionate. Even if I'm furious. How amazing is that?

Yesterday, Ella wouldn't put her shoes on when we needed to leave the house. I was explaining why we needed to have our shoes on and helping her decide that she did, indeed, need shoes on her feet. Out of the blue, she asked "Mama, are you mad at me?" What!? She's never said that sentence before in her life. I said no, I'm not mad at you! And we had a conversation about being mad, forgiveness, etc. Later in the day, I snapped at Ella because I was exhausted and hungry and even Mamas get cranky, believe it or not. I apologized to Ella for being crabby with her, because I know that hurts her feelings. She piped up "It's ok, Mama. I forgive you. I still love you." Sheesh. I am learning a lot from this tiny little being.

Jonah knows the answer to this question, but asks it frequently just to hear the answer again as reassurance. He asks "Do you love me? Will you love me forever?" The answer is always yes, yes, yes. I love love love you. But the question makes me stop in my tracks and pay attention to Jonah, who obviously is in need of some Mama Love at that moment.

I think kids are fascinating. The way their minds work. The things that make them unique. The questions they have. It's an incredible gift to be able to spend my life raising these four interesting kids. Yes, it's challenging and frustrating sometimes, and sometimes I get cranky and upset, but then there are these moments that let me see into the hearts of my kids and what I see inspires me. Sometimes I don't know how to answer their questions (especially regarding Michael Jackson or God), but I know that they know that they are loved and respected. And they make me laugh loud enough for the neighbors to hear every day.

SPD Halloween

Halloween is not such a fun holiday if you’re a small boy with Sensory Processing Disorder. Think about it- everyone you know, and many kids you don’t know, are dressed as all kinds of crazy things. Buzz Lightyear, princesses, aliens, hot dogs, the grim reaper. You get this group of bizarrely- dressed hooligans together and go from house to house ringing doorbells and asking strangers for candy. Everyone looks weird (and a little scary), and those weird people keep coming to your house to bug you. Weird.

Aidan is 6 this year, almost 7, and I think last year was the first year he agreed to wear a costume and go trick-or-treating. Those pictures Mama dreamt of, with all her sweet munchkins in their costumes on Halloween evening, giddy with the anticipation of all the candy they’d soon be getting…not gonna happen, Mama. I realized when Aidan was very little that this was not his cup of tea- dressing up in a weird, itchy, constricting costume to go outside in the cold with mobs of other weird, scary, strange children who were hopped up on sugar and whooping and hollering with their own excitement.

After his first Halloween when I dressed baby Aidan in the sweetest little bear costume, he’s been done with the Halloween Hoopla. When you have a child who has SPD, or any other diagnosis, you have to bend your expectations and learn to accept that all your little dreams might not come true. You might not have years of Halloween pictures with all your kids lined up, dressed in an array of costumes. But there are other dreams you can have that sometimes exceed all expectations.

For five years, Aidan would participate in trick-or-treating disguised as…himself…for a brief few minutes. Then he’d get tired and bored and cold and irritated with the whole crazy experience and we’d drag him home. Having to explain at every house that our 2-year old, then 3, 4, 5 year-old Aidan was dressed as himself got old quickly. People looked at us like we were a little nuts, not costuming our cute little boy. Like we were depriving him of some vital childhood experience. Like how could we call ourselves “American” when our child wasn’t dressed in a costume on Halloween! I wanted to shout at those slight scowls we got “It’s not MY choice that he doesn’t want to wear a costume like all the other good American children today! He has SPD!!” But I smiled supportively as Aidan hesitated before each door, waiting for his big brothers to get him a piece of candy instead of facing strangers in person. Even if the strangers did have loads of candy they were giving away free.

Last year, all four of my kids wore costumes on Halloween. I was pretty excited- I was finally going to get some adorable Halloween pics.
But Daddy didn’t make it home from work for trick-or-treating. So I was on my own with four kids who have SPD. Great. I was exhausted even before things got started, from trying to wrestle four kids into costumes by myself, with our doorbell already ringing with excited friends who wanted to see our costumes. The kids were tired and grumpy at the beginning of the excursion, so you can imagine how they were by the end. Jonah and Ben had just gotten braces a couple weeks before Halloween, and half-way through the trick-or-treating extravaganza they realized they wouldn’t be able to eat anything they had gotten in their loot of candy.

It was all downhill from there. Mommy was tired. No Daddy to trick-or-treat with. No one manning our candy bowl at our house. (As we walked by our own house, I saw a herd of teenagers taking the entire bowl of candy that had a sign on it that specifically said ‘Take 2 Please!’ so I yelled that they BETTER put that candy back for the LITTLE trick-or-treaters!!! And the herd ran off, leaving some of our candy for the smaller costume-clad beings. Don’t mess with the Mamas of little Halloweeners!) Not being able to eat the candy they got in their bags because of braces. It was just a disaster. So I turned our little crowd of grumpasaurases around and we cut the festivities short.
Sometimes your dreams have to be re-dreamt. Yes, I got cute pictures of costumed kids last year. But the experience itself of Halloween was not so fantastic. The one amazing thing that came out of that long, irritating experience last year was that Aidan put on a costume! He rang doorbells with his brothers and sister! He said “trick-or-treat” so that people could hear him and held up his own little bag for a goody! I was very proud. No more scowls from people. My boy was in a costume! We made it.

This year, we’ll see how things go. Aidan is very excited about his costume- Captain America. I think he’s getting caught up in the fun of it all, and is able to hold his anxiety at bay. I have learned to be flexible. It’s not the end of the world if my kids don’t all have a costume on for Halloween. My pictures will just have some costumed-kids, and some non-costume-wearers. Such is life. My hope now is just that all my kids have fun and make good memories of childhood Halloweens. Costumes or no costumes. 

Tuesday, October 2, 2012

One Sunday Morning

Here's the anatomy of a moderate Rage at our house. Here's the reason we usually don't volunteer for anything, have friends over, or make commitments. 

Sunday morning. My sweet son rolls out of bed, sweaty, because he sleeps covered in fleecy pj's from head to toe and with three layers of blankets on top of him. He stumbles into the bathroom with another set of fleecy pj's. I tell him we have to get ready for church- why doesn't he put on his clothes instead of putting on more pj's, since he'll have to change soon anyway? He gets grumpy and refuses to listen to me. Sweaty fleecy pj's are replaced by clean ones.

My son comes downstairs for breakfast. He says nothing sounds good to eat. We finally agree on something, but he refuses to eat at the table. He is comfy laying on the couch so we agree he can eat there. Meanwhile, my hubby and I are trying frantically to get everyone else ready to go to church. We have one sick kid, two who are excited to get ready for the day, and one more who I can tell is going to have a tough morning.

Five of us are ready for church. We have to leave in 15 minutes so my hubby and I can teach Sunday School. My sweet, grumpy, pj'ed son refuses to get off the couch, despite my constant (yet patient) requests for him to get moving, get dressed, take his medicine, brush his teeth, come on! We have to teach, let's go! He says he has it "under control." 

Apparently his idea of control, and mine, are completely different. 

My son started progressing into his Rage mode. He refused to get dressed. I got the other three kids into the car to wait, and avoid the Crazy that was about to happen. We sat in the car for 20 minutes, waiting for Daddy and Grumpy Guy to join us. Finally I went back into the house to help. Our son was still in his pj's, now in full-blown raging mode, all because he could only find one shoe. He did not want to wear his sneakers, he would only wear Crocs, and could only find one of them. He was on the floor, kicking, screaming, swearing, throwing anything he could get his hands on, and lashing out if we tried to come close to him. He was completely irrational. There was no reasoning with him, no comforting him, no rationalizing. He was too far into the Rage.

We tried all the things that potentially can calm our son down, all the while trying not to be stressed because we had made a commitment to volunteer at church which we were going to be late for. Our son continued his challenging behavior. Screaming and thrashing on the floor in anger. Every solution we came up with for his many complaints was met with swearing and irrational, screamed retorts. Finally Daddy joined the three calm kids in the van, and headed to church, while I stayed behind to deal with The Rage.

We finally got through the Rage, after 45 minutes of intensely challenging behavior. I wheedled away at the Rage that my son was suffering through. I found shoes that were acceptable, although they were his brother's. (Sometimes it's very nice to have a twin.) Daddy had found a Bible for our boy to bring to Sunday School that met all the criteria that our son demanded (Not a picture Bible. No writing in it. Not bent.) 

I got my son into his clothes. We skipped tooth brushing. We forced some meds into his body with the bribe of a spoonful of yogurt, which comes out when my son is really struggling. I thought we were headed out the door, only a little late, when my son refused once more to go to church. This time because he was afraid of two things. One, that his face was blotchy and red from screaming and crying for 45 minutes, and two, that people at church would find out how he had acted. We got a box of tissues to take with us in the car. We took some deep breaths. We talked about how to calm down, how the cool air outside would make my son's face look normal again. We talked about how we weren't going to talk about his rage with people at church. We never tell people how he acts when he's having a rage. Most people couldn't even imagine this sweet boy behaving in such an out-of-control way. This is a battle we continue to fight in private, at home, the best we can.

My son works on these issues in his many therapies every week. He has worked on these issues in therapies and at home for most of his life, and he has made major improvements. He is much more in control of himself more of the time. He doesn't act quite as aggressively as he used to. And the frequency of his rages has definitely lessened. There was a time when he would rage almost all day, every day. Then he would have only several rages a day. Now we're down to once in a while. It still takes a whole lot out of all of us, even if a rage happens only once in a while. We're all left deflated, emotionally wrung out, prickling with the remnants of Rage.

My son, after a Rage, is like a deflated balloon. He is desperately sad. Tired. Apologetic. Disappointed in himself that he lost control. I always think back over the whole episode to see what I missed. What signals did I lose in the rush of the morning that could have shown me that my son needed help to navigate life today? Even normal parts of life can be filled with mines for him, parts of life that most of us take for granted- like getting dressed. Is my boy struggling with too much sensory input? Are his feelings hurt? Are his clothes bothering him? Is he frustrated? Sick? Hungry? Did he take his meds on time? If I can catch the signs my son unknowingly sends me that he is about to lose control, sometimes I can help him head off a Rage. We dig into his bag of tools that he has learned from years of various therapies, and we find a tool that will help us handle the obstacle my son is facing at the moment that seems ready to tip his whole world out of balance. But sometimes life is busy and messy, and Mama misses The Signs. And then my poor boy heads into The Rage, and none of us can get off the ride until it ends. 

When our son first started raging years ago, I thought it must be somehow my fault. What was I doing, or not doing, that was causing this? Causing my son to be so out of control that the smallest thing could set off an enormous reaction? Over the past few years I've learned it's not actually my fault that my son has rages. But I've also learned there are a lot of things he, and his daddy and I, can do to help him avoid a rage or minimize it. We are in a much better place than we were a few years ago, but the rages still happen sometimes. 

It's unusual that a boy who is 10 years old will have a tantrum about something as small as finding a shoe. It's taken us a long time to realize there is a difference between a tantrum and a rage. Tantrums are what toddlers do when they can't get their way. Tantrums are purposeful. Rages are a loss of control. My son is totally out of control when he rages, and it's not because he wants to get his way. Rages do not serve a purpose in the way that tantrums do. Rages are just extreme, out-of-control anger. When life is overwhelming for my son, and it's all just too much, rage overcomes him. Sticker charts don't lessen the frequency of rages. Rewards or punishments don't either. It's just a matter of figuring out how to efficiently help my son get calm as fast as possible. That's why our therapies have proven invaluable-now we have tools we can use that actually help our son. Sometimes.

My son spends a lot of time working on not overreacting to life's stressors. He never realized that most boys his age don't totally freak out and lose it over small things like he does, until his therapist pointed this out to him. She asked him how a friend might react to something he had recently had a rage about, and he was taken aback to realize his friend would not have reacted the way he did. He reacts to everything with anger, and everything is a 10 on the anger scale. It's a work in progress. And he has made a lot of progress.

So we all did make it to church, and we were able to teach Sunday School. We all felt a little shaken, and we were late, but we did make it. But this is why we seldom volunteer for things or make commitments. It's not that we don't want to be involved in our community or have friends. It's that we never know when a Rage will rear its ugly head. We never know if we'll be able to make it somewhere on time or if some tiny little thing will summon a Rage, and we'll be stuck dealing with it for an hour. 

Life is a whole lot calmer than it used to be, thanks to meds and behavior modification and therapy tools, and I try to focus on that. I also try to help my son figure out what went wrong after he has calmed down from a Rage. We talk about what he could have done differently. We talk about not overreacting. We also talk about how no matter what, Mama and Daddy will always love our boy. Nothing will ever ever change that. All I can do is hope that he lives every day of his life knowing with all his heart that I love him more than anything. Maybe there will come a day when our sweet boy doesn't have to suffer through rages anymore. That's our hope for him.