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Archive for the ‘SPD’ Category

Uncomfortable

Henry is uncomfortable. He has always been uncomfortable. Clothing itches. Slightly too long hair distracts him. His sock seam is not straight. It must be corrected. I know it sounds like no big deal. It is thThe quality of the winter light gives him a persistent headache that is the background his whole childhoodough.

He hears too much. Phones are too loud. Firetrucks, fire alarms, ambulances and occasionally even the chime of our downtown crosswalk – all of them are too loud. Lightbulbs are sometimes too loud. The buzz in his ear. Bugs are too loud. He can hear them too. He can hear the breeze, the traffic and the dogs 3 block away. The planet is too loud for someone who cannot screen out background noise.

While trying not to hear all of this, he is seeing too much. The quality of the winter light gives him a persistent headache that is the background his whole childhood. People in motion, classrooms crowded with signs, posters, artwork. In an effort to make sense of it all, he will hyper focus on one thing – if it is a computer screen, or TV screen that will trump all other visual stimulations. If not he will focus on reading that sign in the hallway, an effort to block out the moving kids, the traffic outside, the patterns on the floor and the buzzing fluorescent lights.

I don’t know how he gets through lunch in a cafeteria swarmed by first graders. He smells and tastes too much too, though this seems to cause less discomfort than seeing and hearing too much.

At nearly 7 he knows he is uncomfortable. He knows he is not as comfortable as some people. He does not understand that neurological dysfunction in vestibular sense prevents him from feeling grounded and connected to the earth. Sometimes I feel mildly disoriented if I miss the last step on the stairs, or if my chair isn’t exactly where I thought it was . I land a bit sooner or later than I planned. Gravity misbehaved. Henry lives like this. He is perpetually seeking that grounded connected feeling. I remember running down a steep driveway with my friends when I was his age. Our mouths open making the same ahhhh sound we would for the doctor listening to our own impact with the pavement changed our voices. The impact of my feet on the pavement shooting up my legs into my core. Henry seeks that daily. His body crying out to say it: Pound, pound, pound, I am here, I am connected. I am earthbound. Most kids with SPD have anxiety. Henry spent 3 years afraid the wind could make him blow away.

Henry is uncomfortable. He doesn’t know he muscle tone is lower than average. He is working on his pronunciation of proprioception. So am I. He knows but cannot explain that his body needs extra input to know how much strength to use for its tasks. Sometimes he uses too much, sometimes he uses too little. He struggles to locate his body parts in relation to others. We go to Karate and yoga to help with this. He works harder than anyone to get his body in the right position. Voice modulation is also controlled by proprioception. Henry is perpetually too loud. He speaks loudly both to hear himself over the background noise and because he has no idea how much effort to put into speaking in a normal tone.

When he was younger he hated drawing. He could not grasp a crayon an He had no idea how much force to use. It would slip over and over again. Once he figure this out, he still hated it. He had to figure out how to get the crayon to make contact with the paper in the right spot. He also had to figure out how to hold the paper still with his opposite hand. Then he could draw. It took him 18 months to enjoy this simple childhood activity of coloring. He never gave up. Henry writes three sentences every morning in first grade.

My name is Henry.

Today is a cloudy day.

I am __________________.

He has filled that blank in with many typical words. I am happy. I am excited. I am tired. I am hungry. Last week he wrote,

I am a hard worker.

No joke.

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Where am I am smiling, mom?” We are looking at baby pictures of Henry in our photo software. It’s opening because iPhoto has been acting all strange. Things are not where they are supposed to be. There are 3-4 version of some pictures. In off moments, I’m trying to sort, to make room for the hundreds more pictures we will take this year.

Is that me, smiling?” He scans for signs of happiness. He absolutely smiled when he was a baby. I know because he was just the sweetest little soul. I can tell from the pictures that I kept trying to get just one with eye contact and a smile. The ones with his older brother are the best, or his baby friend Ella.

Did I like being a baby? Did you like that stroller? Did that toy make me laugh?” My kids always know. They share just enough of my own thought life to know where it is worth digging for treasure or dirt.  I wish I could say I blocked out those early months with Henry, but I have not. My husband does not enjoy the walk down memory lane. “It hurts to think about,” he says. I agree but it hurts more to look at those photos and not talk about it. I carried that child on my body for months. The pictures I have of him not in my arms were moments he was well enough to be put down. There were moments I had arms and distance. I’d take a picture to document his cuteness. But, he was too thin and sad. He was sick. He was sick and now he is 6 1/2 years old with just a little bit of information.

I’m not sure when to have the talk. When do I tell him that he was such a sick baby? Does it matter now?
Maybe my larger question is how to talk to Henry about Sensory Processing Disorder and Anxiety without making it all too hard, sad and terrible. There are amazing things about him that come with the SPD and the anxiety. He has all the highly sensitive person traits that people talk about, without the introversion. He has a will of iron which he uses to attempt to bend the universe into a manageable level of stimulation. It’s not pretty but it has served him well over the years. He wants to be “normal,” and is not. He has no savvy. It’s like living with Linus, the most sincere Peanut person of all human history.

Hello there! Happy Halloween! Trick or Treat, but no tricks, because that would not be so nice. Are you having a good holiday?

That is how Henry tricks and treats. At Christmas, he shouts out “Christmas Joy to us all!” He has no idea how much cuter he is made by his big hair. He has learned it is big. “Will kids make fun of my hair? Will my friends laugh? It is so big today.” It gets bigger when he is happy, sad or angry. He is almost always happy, sad or angry. His hair knows, like he knows he was not a “happy” baby. He has no neutral. We strive for 3rd gear. Getting out of 1st and staying out of 5th may be a life-long project.

He was happy, when he was well. By temperament this is a person who loves to be joyful but trips on every obstacle in his path. So, do I tell him he has a disorder? Is that just another obstacle for him. I want him to have a little savvy. Just enough to help himself out of a fix, and let his hair do its own thing. I want him to know the bright lights and extra loud sounds of PE may set him on edge just enough to create a meltdown later in math class when he writes the number 4 not quite right. I want him to know his penmanship is exception for someone with such overall low muscle tone, but I also don’t want him to change the benchmarks he has for himself. I don’t want to promote the idea that anyone is expecting less. We are not. I’d just like him to give his own 6 year old self a break sometimes. But he won’t. He is driven. He will no more give himself a break than he will give me a break. His brain is a sponge. It needs more and more to chew on. When he is bored, he worries. When he worries, his adrenaline sky-rockets, and the sensory processing get worse.
He must press forward. He cannot pause. I am left wondering if I should tell him, what I should tell him if I do tell him. I’m still looking for him smiling in the pictures. It’s there. He knows. We both know there is a truth not yet uncovered in all this. I’m not trying to hide it. It’s hidden in plain sight.

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Doesn’t it hurt when you are terribly sick with a cold and someone suggests you think yourself into wellness? It hurts me and that is just a cold. It hurts even more when someone suggests the thoughts I had during pregnancy have made my child anxious. I live with an anxious child and he is a complete delight. I’m not sure if I took away all the more troublesome aspects of Henry that he’d be the same person. Should I wish for a different better child? Is he less valuable to our society because his brain works differently? It’s not exactly busted. He reads, writes and does math well above grade level. He is a good friend, hilariously funny and a fiercely protective older brother to Theo. Is anxiety always the opposite of happiness? There are birth professionals in my own field who suggests that the way I experienced my pregnancies led me to have either a happy or anxious children. I find that dichotomy troubling. I myself experience anxiety and happiness quite regularly. So do all three of my children, including the one with a diagnosable condition. Is it all so black and white?

I realize there is some very excellent research showing that fetal development is impacted by maternal environment. I’ve even written about it over here. I’ve read about it in Time and there is a new book, Origins,  which I will one day read and review. I think the science is there to document the impact environment has on development. In a Salon interview,  Annie Murphy Paul, author of Origins, alluded to people freaking out when new research like this comes out. I am here to say that “the freaking out” has begun. Women are looking at this book and wondering, “Did I worry too much during my pregnancy? Not enough?”  And standing in the wings waiting for them, are people ready to make money coaching them how to do it  better next time – or how to do it perfectly the first time – through “The Power of Positive Thinking.”

The book, which is called The Greatest Pregnancy Ever, is not yet released. I will read it. I will get back to you. I cannot fairly review a book that I have not read. I can tell you that I read the overview as published on the website. To me there is much that sounds good enough on the surface, but when look at the flip side, concerns abound. If my stress can shape my baby’s personality and I already have a child with an anxiety disorder, then I got what I deserved right? My guess is that authors have take scientific data that is more helpfully viewed through a sociological lens, for example, seeing the ways that race, class, income and war impact maternal-fetal health, and shot it through what I will call The Power of Positive Thinking Tube.

Picture this tube like a digestive track. Take perfectly good scientific information, or simply good self-care practices, such as having a positive outlook, or looking for ways to see the good in life’s challenges, and shoot it into The Power of Positive Thinking Tube and frankly, crap comes out the other end.

We take:

the science of fetal development + colicky baby who will not sleep

insert into-> power of positive thinking tube

add the mommy guilt feature * sleep deprivation due to colicky infant

+ dr. google

with the result

= I did this to my baby by having stress during my pregnancy.

The truth is that research shows having a moderate amount of stress during pregnancy is healthful for fetal development. Chronic stress (such as being a black woman in America, enduring poverty) and acute stress (experiencing war, trauma, natural disaster) do have impacts on premature delivery rates. The normal stresses of women who work, parent and read websites about how to have the best pregnancy ever are not the problem. The Power of Positive Thinking Tube personalizes things that are simply not personal. As Bill commented on my previous rant, post:  To paraphrase some guy: “Your tire is not flat because the universe is out of alignment and God is angry with you. Your tire is flat because there is a hole in it and the air won’t stay in.”

In sum, I’m okay with the science. I’m a little concerned about how our society is going to use it to screw with moms. More sensible thoughts on both books, after I’ve read them. I’d like to hear your thoughts on the difference between positive thinking and The Power of Positive Thinking. How do we compassionately care for ourselves and others when we have not ended up with “the best possible result?” And, who decides what is best?

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Well, I made a valiant effort at clearing things up with the principal, but since she did not call me back, refused to take my calls and sent me a dismissive e-mail, things are not actually cleared up. The whole situation did a great job reawakening my urge to cut, so I am bowing out politely. I sent Matt to the parent teacher conference & have decide to disengage. Since then, I have seen a teacher hanging out at the back fence perusing my deck for signs of crime. Right now we just have chives, parsley and some old Tonka trucks.

I don’t love having to be super, super cautious about the noises my kids make out there. The little ones squabble, yell and generally make loud distressing noises – sometimes they are real and at other times completely fake (oh, nothing, mom. I’m not stuck. I am pretending my truck is stuck.) We try to always be mindful of our near neighbors, but they are all out at work during the day, so we have no one here to bother. We are muddling along, enjoying the deck as best we can. In six or seven weeks, school will be out.

The root of the problem here is sensory – at least I think. That week Henry had a high need for body input. He wasn’t getting the impact feeling he craves. Imagine if you just couldn’t feel the weight of your bones, the compression of your joints. This is an area of major dysfunction for Henry. It is called proprioception; it is our kinesthetic sense. You and I both have an unconscious awareness of sensations coming from the joints, muscles, tendons and ligaments within our own bodies. Henry does not. Hugs need to be tighter, jumps need to be bigger to get that grounded feeling. If he doesn’t have a means to get what he needs, he will find one. Every now and again, he finds one that is behaviorally inappropriate. The problem is that he is getting a big sensory reward – even if he gets discipline, the pay off sensory wise is so big.

I’m working hard at figuring out how to give Henry the body input he needs – so he doesn’t kick and crash other people to get if for himself. We are considering a weighted vest. They are fairly expensive. Our occupational therapist suggested putting pennies in the pocket of his hoodie, but he takes the bags of pennies out to admire them. So, it looks like a sewing project is in order. Look at this one. It would be a great thing to make Henry, especially if we changed it to a super hero theme. He loves to dress up. There are so many wonderful amazing things about Henry. It is so sad and frustrating when we get into a bad cycle and he screams about make discipline things like not kicking people. He is truly such a sweetheart. I know he doesn’t want to hurt me, but he loses control enough to head butt me….and his head is quite a size. I should know. In the meantime, we are in gymnastics on Thursdays, at occupational therapy on Tuesdays and I have added weekly medically necessary trips to our local Jump Zone. (hand sanitizer included in price) I wish we could get our insurance to cover the price of that. It is harsh on the budget, but so incredibly helpful. Since we went twice in the last two weeks, the kicking has decreased dramatically! Thank heavens for small mercies. Jumping is good. Herbs and trucks on the deck are good. Pennies in the pocket are good, but too interesting to be effective.

Things just don’t go according to plan. My plan was that I’d call the principal and explain our situation. It would be all cleared up. We are normal. We were having a rough day with the SPD, but are working on it. The authorities would approve of me, would be concerned about my child. She’d call the town occupational therapist and we’d get more occupational therapy sessions, maybe even some at school or in our home. We’d all lived happily ever after….um, no. The principal has indicated to me that she does not wish to discuss the situation, that I should only call her again if it specifically refers to the one child I have who attends her school. Let’s just say, should that child begin to struggle at that school, she will not be at the top of my call sheet. That is my new plan. I am addicted to plans. I can’t help it.

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However, I am posting this a day late. We spent all of yesterday outside!
For more 7 Quick Takes, don’t forget to visit Jennifer at Conversion Diary.
Jennifer, thanks for hosting!

1.
Of course, you guys are right; we can’t actually hide in our house being quiet all the time. If nothing else, we’d go insane. I took exactly three rainy days of public school vacation week to drive this point home hard. Having coped with that challenge, my plan is to enjoy the sunny weekend and then make some calls on Monday: a. to principal of local school b. to preschool special services (from whom we currently receive no services.)

2.
Yesterday, summer arrived temporarily, but with great gusto. A friend and I met up at a state park for sandy, wet fun. The kids enjoyed themselves all the way down to the sand in Theo’s diaper. They kids loved getting soaked despite the fact that we had not actually dressed them in swimsuits. They chased after frogs, listening to those spring peepers and mistaking their mating position for mamas carrying babies on their backs in ergo style carriers. Jill and I mutually decided to let everyone think what they wished on that topic. We were neither prepared to bring frogs home, nor to discuss the mating habits of spring peepers, nor to swim. We let them swim though! We had a near disaster as a summer wind blow Roley the truck to the middle of the pond. Just as we were about to give up, the day was saved by a sweet dog named Coach and his kind owner who sent him to fetch. Henry would have been broken-hearted, but instead was grateful and overjoyed. He will always remember Coach!

3.
We are moving to Northampton. We are planting a church there. I tell myself this from time to time, because everyday life tends not to reflect this reality. It looks more like diaper changes on a three year old with a ten day course of antibiotics in him. However, a glimmer of hope – we are going to lunch with our team mates a week from tomorrow. If you pray, wish or knock on wood, we are hoping that no illness, no overtime work, and really nothing at all will prevent us from going to catch up with our people.

4.
A rather momentous update on the Kindergarten front – so momentous that I can hardly take it in! Henry will be all day in Kindergarten in September, no matter where we live! If we move to Northampton, the public school program is full day. If we stay here, both Henry and Theo have been accepted by lottery to a public magnet school that provides full day Kindergarten and Preschool. I am absolutely speechless and cannot wrap my ahead around. I know my heart is relieved. Our local Kindergarten dismisses at 10:55am & Henry needs much more structure than that. I was panicking, but no longer.

5.
Wow, my kids is almost 10. He is awesome, super helpful, full of deep thoughts and silly jokes. He is also fast approaching adolescence. He moans loudly when woken by his younger brothers, has a tendency to sulk and when bored and miserable loves company and tries to take the whole family down with him. Nevertheless, we are forging ahead with him…seriously, we are fine. It is just, well, new and intimidating. We have no idea which side of Isaac will appear from one moment to the next. Also, he eats and eats and eats. I need to teach him to cook.

6.
This is the first season of American Idol I have watched. I am enjoying the show, but Paula and Simon are just embarrassing to watch – as was the disco medley. My skin crawls when I feel embarrassed for others, and it always has. I can’t quite laugh at everything on the fail blog. I always end up feeling badly for people. I need to harden up, so I can keep up with Idol in the coming weeks. My true love is SYTYCD.

7.
The back deck garden is coming along. I am hoping to grow enough food there to muffle noises of joy and distress from children sent to the play dungeon.

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I sink into the hot water of my bath, hoping to reach a moment of relaxation in the midst of motherhood. It is 10am. The children are fed, dressed & playing. In the background I hear the noises of boys. Their noises grow louder & I sink further into the water to drown it out, then my eye pop wide & I rush out to quiet him. It was nothing, I discover, while cold & wet – a toy squabble, that disappeared as soon as it erupted.

Mid morning at our house, the children either reach play equilibrium or existential crisis. If crisis, I throw on jeans and a sweater and we venture out into world to see if the library, the park or the YMCA will cure our ails. If equilibrium is established, I say a quick thank you to Jesus and exit stage left for a shower, or a bath & spend the day doing the things I do when at home (blogging, laundry,Facebook, dishes, cooking a proper meal for once…)

The morning hot bath is a small sanctuary of my day. I have long since learned to ignore the noises of boys at play & boys squabbling over toys, the noises that require no immediate attention for me, the noises I might choose to address if fully dressed and dry, but that I can pretend to have not heard while in the bath.

That small gift is gone. While sinking deeper into my hot tub, the loudness of him reached my ears & for the first time, I wondered, what if some one else hears him & decides for themselves what it means. What if we get a second visit from social services? Surely, that could not possibly go well.

And then I was wrecked and angry all over again. Angry at my child, for unknowingly putting me at risk, at myself for being unreasonably angry at him, angry at his condition and how easy it is to overlook, but how hard to live with, angry at the principal who instead of calling me back, called social services – and who still has not called me.

I dress & go downstairs. I find myself hushing him more than parenting him. I am watching my own back, rather than addressing the source of all the noise. I am fearful, as a parent, vulnerable. At night, I dream of people breaking into our apartment. I call the social worker who visited us & ask her if she called the school. She said that she had & had been assured that someone had called me, the principal or the school psychologist. But no one has.

“I’m glad they called me and not the state. This ends here. If they had called the state, it wouldn’t.” She says this matter-of-factly, as if it is to be some comfort to me.

I shudder to think that at another time, someone might call the state instead. I hush my kids. I shudder to think that one shriek could bring down what is starting to feel like a house of cards. I hush my kids at they squabble over a train. Maybe no one will see us if we are quiet enough.

Is this making me a better parent? Thanks for your concern, oh teachers who came to the back fence, you are really helping my child, now that you have made me afraid of disciplining him. Things are looking up, for sure. All he needs is to be given his way all the time. People love it when kids with learning differences are given their way all the time…when he comes to your school next year for Kindergarten, I’m sure you will love it too. Be sure to thank me.

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I sink into the hot water of my bath, hoping to reach a moment of relaxation in the midst of motherhood. It is 10am. The children are fed, dressed & playing. In the background I hear the noises of boys. Their noises grow louder & I sink further into the water to drown it out, then my eye pop wide & I rush out to quiet him. It was nothing, I discover, while cold & wet – a toy squabble, that disappeared as soon as it erupted.

Mid morning at our house, the children either reach play equilibrium or existential crisis. If crisis, I throw on jeans and a sweater and we venture out into world to see if the library, the park or the YMCA will cure our ails. If equilibrium is established, I say a quick thank you to Jesus and exit stage left for a shower, or a bath & spend the day doing the things I do when at home (blogging, laundry,Facebook, dishes, cooking a proper meal for once…)

The morning hot bath is a small sanctuary of my day. I have long since learned to ignore the noises of boys at play & boys squabbling over toys, the noises that require no immediate attention for me, the noises I might choose to address if fully dressed and dry, but that I can pretend to have not heard while in the bath.

That small gift is gone. While sinking deeper into my hot tub, the loudness of him reached my ears & for the first time, I wondered, what if some one else hears him & decides for themselves what it means. What if we get a second visit from social services? Surely, that could not possibly go well.

And then I was wrecked and angry all over again. Angry at my child, for unknowingly putting me at risk, at myself for being unreasonably angry at him, angry at his condition and how easy it is to overlook, but how hard to live with, angry at the principal who instead of calling me back, called social services – and who still has not called me.

I dress & go downstairs. I find myself hushing him more than parenting him. I am watching my own back, rather than addressing the source of all the noise. I am fearful, as a parent, vulnerable. At night, I dream of people breaking into our apartment. I call the social worker who visited us & ask her if she called the school. She said that she had & had been assured that someone had called me, the principal or the school psychologist. But no one has.

“I’m glad they called me and not the state. This ends here. If they had called the state, it wouldn’t.” She says this matter-of-factly, as if it is to be some comfort to me.

I shudder to think that at another time, someone might call the state instead. I hush my kids. I shudder to think that one shriek could bring down what is starting to feel like a house of cards. I hush my kids at they squabble over a train. Maybe no one will see us if we are quiet enough.

Is this making me a better parent? Thanks for your concern, oh teachers who came to the back fence, you are really helping my child, now that you have made me afraid of disciplining him. Things are looking up, for sure. All he needs is to be given his way all the time. People love it when kids with learning differences are given their way all the time…when he comes to your school next year for Kindergarten, I’m sure you will love it too. Be sure to thank me.

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