We are here, we are theirs

Being here in Ethiopia again is approximately three billion times more amazing than I anticipated. We love it here. In that love totally fails to describe how we feel about it here. The people, the traffic, the crummy phone connections, the taxis, the smells, the food, the people, everything. The good the bad, all of it. Driving around though people see me as ferengi, white foreigner, I don't feel like it. It feels like a second home. We are making more friends. Putting down more roots here. Can one have roots in two places? Can one jump between roots? 

Our daughters are officially ours. We are legally theirs. We passed court, we've spent amazing hours with them. I don't know how to say this without being snobby or preachy or obnoxious but it must be said, adopting older children is possibly the biggest leap of faith of our lives. And three days in the return on faith investment is overwhelming. I wish more people could experience the awe, and the joy that we are experiencing. I will not be so ridiculous to suggest that it will ever be easy, or that everyone should do it, but life-alteringly beautiful? That I can stand behind, as much as someone who is three days in can stand behind something.

They are everything. Brilliant, strong, special, capable, emotional, happy, perceptive, helpful. The adjectives are pathetic. The girls, well, we are officially the luckiest people on the planet.

More details about the trip and girls are over on faceschmook. Come join the party.

Bliss is my middle name. "Mom" is my first name, according to my two new daughters.

Yeah, they call me Mom.

twelve

garish white fluorescent lights flicker off. on. off again. and a cop yells at me
ok, he doesn't yell
and maybe he isn't a cop
but he is acting tough and irritated
store's closed, he barks, proceed to the check out.
i say thank you and
reach for nail polish but my hand falters as he says with a sneer
check out line, now
i don't even look at him so he can't see my total apathy for his opinion of the direction of my cart

am i really holding up the entire operation here?
there are at least thirty people in the store still
all of us desperate, pushing carts with purpose
not one of us here on a whim, we all need something now, not tomorrow, now
i am here searching
for dramamine for poor roads in rainy season in third world country
for diapers
for pajamas for girls of unknown sizes 
for something to help break ice between us and new daughters when we meet
daughters who don't know our langugage
and we don't know theirs

six year old, somewhat easy, especially with the lights off. doll with brown skin, change of outfit for doll. done.
twelve year old has had me drawing a blank
how twelve is twelve anyway?
is it mature twelve who would frown at a doll and the lame bearers of such a gift?
mature twelve who is more into, what? music? clothes? books? what do twelve-year-olds like in rural Ethiopia, or in the US for that matter?
ohmygoshihavenoideahowtobeamomtoatwelveyearold
or is it younger girl in twelve-year-old body who has suffered loss,
who has never had a toy to call her own so a doll would actually be treasured?
paralyzed in the toy aisles, cop being pushy
i wipe hot tears, looking around at all the plastic, useless crap
what would a twelve year old want? what would make her smile?
what if i bring clothes that are too small or too big, either way is disappointing.

they usher me out, my list half undone
tomorrow night we leave
i have a little more time
how twelve is twelve?




 

Soliciting Goodness

Things to do before we leave for our court hearing in Ethiopia in six days.

Buy new luggage - Hub's bag got busted in November when he was there
Record videos of us reading to the kids and singing to them. One for everyday we are gone since we won't always have phone/internet access.
Make list of foods my kids will eat for my mom
List of activities they can do that do not involve busting lamps and blinds (and hidden locations of these activities like playdoh, etc)
List of favorite parks and addresses so Mom can put in GPS
Finish life book for Cookie    done!
Finish life book for Tsega
Plan 12 hour layover party in Frankfurt Germany 
Plan side trips while in ET, work out drivers/translaters
Collect letters and packages that folks need us to take to birth families in ET
wrap presents for kids to open while we are gone
help kids make paper chains to help them count down the days until we come back. hide chains so they don't get destroyed while we are gone.
clean out DVR  done!
collect donations for care center
plan trip to visit Tsega's special people 
figure out why smoke alarms keep going off and then stopping scaring the holy crap out of everyone at night
check brakes on van 
travel immunizations
pack everything, decide what goes in carryons, what is checked

***

Can you tell I am in trouble?  Taking a break from the list for a moment to think.

It has been two years since upheaval of the most dramatic kind.  Seriously, go look at the date on that post. We narrowly avoided tragedy. I almost had a baby three months early in a country that has no hospitals capable of handling a preemie like that. We avoided sheer mayhem by a mere 48 hours. God had his hand all over our timing and our family.

our first moments home with Tsega. fresh off a 35 hour flight. look at my jetlagged tired face. look how tiny they are. my small 27 week belly. i got one night's rest. the next night my craptastic uterus gave up on the pregnancy. i had to leave my three babies and go to the hospital to have another one.

I really believe God pulled it all together. Everything about our two younger boys' entry into our family smacked of miracle. I think even the staunchest of non-believers gotta admit, our story was incredible. I still get weepy when I think about that time in our lives.

Here we are two years later. Only two for heaven's sake, eyebrow deep in another family addition adventure. We never knew it would be like this. And however deeply unfair it is to other families who've waited long long waits, it is happening really fast.

We started the adoption process again this year feeling someone was missing. We thought the process takes much longer this time. We gotta start now. We felt an urgency. We felt that need to Hurry up and Wait that is game of international adoption.

But then we saw two girls on a list, waiting for a family. And we didn't "wait." We accepted a referral a week before our dossier was even finished. We cut out 20+ months of an adoption process. And then we were all, OK, it's two kids. Not one. This feels right. We will be good. Better than one. They will have each other. It will be crazy hard but we will be good in time. It's still a ways away. This could take until Christmas, or even next year. We have time.

We are realizing that we might not actually have time. In six days we leave for Ethiopia to see them. Meet them. Hold them if they want to be held. Smile with them. Talk to a judge in a court hearing about them joining our family. She or he will decide if they will be ours.  And I just found out blog friend of mine also in the adoption process had a very short wait in between their two trips. We were thinking we would go to court, and three to six months later we travel to bring the girls to our home. No, this friend had a mere eight weeks. And even more startling was when she shared that three of the families in her "court" travel group traveled for the second trip just five or six weeks later. She had had the longest time between trips in her group.

Five to eight weeks. Not five months. Gulp. We don't even have a place for them to live, yet (though the contractors are here putting up walls as I type). We went from one child sometime in 2013 maybe, to two children possibly by the end of the summer.

My mind is blown. This was not the plan. We are trying to get over the shock still. It feels stressful. I want to be excited and happy for us and the girls and all the kids. But right now, I am a little paralyzed. I asked Hubs this afternoon what he thought about all of this. True to form he said

The nice thing about international adoption is that really, it is so out of control with timing that we just have to believe that when they call us and we go and when the girls come is exactly when God needs them to be here. We have to assume that that is what is best for everyone in the long run, and not worry about it.

That is why I married him, however laughable his last bit of advice is. Now, I wouldn't say I am a worrier. I let my child climb in and out of the grocery cart while it is moving. I have no problems with jumping off the top bunk so long as I don't have to witness it. The ten second rule is stretched to at least ten minutes in this house. I have even been known to scoop stray feces out of the tub and toss it in the toilet without gagging and without forcing all the children to get out. I have mellowed out quite a bit with these four kids. I am no worrier.

And yet, holy cow. Two years ago we added two kids to our family in the same week, and it was stress.full. Intense. Sometimes horrible. And it took us so long to recover. I am all of a sudden hugging myself in fear going Oh no. We are kinda in a good place. We have our hands so full. The boys are so time intensive. Is there enough of me to go around?  Will they all hate me because I am not available enough?

And my biggest worry is Tsega. My amazing, brave Tsega. This trip, both trips, new family members, may just set his emotional and mental health back for months. We've seen what change does to him. We've seen what happens when he doesn't have us near him. Even though I am not a worrier, I am worried about him. More than anyone right now. Brady is gonna have a hard time too, there is no doubt he is not even capable of understanding where his Mama went and this is killing me too. It just plain stinks for my babies. And there is nothing I can do but go. Leave them. And pray that it will be alright in the long run.

So many kind friends and supporters want to know What can I do to help? 

All I can think of is, pray for my little ones.  Especially Tsega and Brady. Pray that they will be peaceful and not feel abandoned. Pray that somehow the days we are gone will fly by. And if you aren't the praying kind positive vibes and juju is accepted too. Or if you are a doctor willing to put the two younger boys into medically induced comas so they don't have to go through ten days of trauma without parents that would be appreciated as well. I can guarantee that is what they would rather do. They could go to sleep, have a nice nap, and wake up not having experienced a lick of fear and abandonment. Ready to tear it up. Anyone who can lend a hand here?

  

Our girls, holding their care packages from us. waiting for us to come. 

Fine. No comas. Prayers then please. For my sweet babies. All six of them. This ain't gonna be easy...


** On another note, I need to focus on that list and leave this place alone. But my guess is I will be on on the FB a bit, if ya'll want to stay in touch while we are traveling. Come on by...

My best hugger

My little Cookie Monster turned four recently. I hate that his birthday is twelve days after his sister's and sometimes ends up getting sidelined, sidetracked and delayed. His special solo date with us (a new-this-year birthday tradition) was pushed back a few weeks, but I am so glad we made it. He still isn't quite old enough or sick of his mother's crap enough to mind my tardiness.

Cookie has blossomed this year. Before he turned two his world was smashed. His world was, well, me. I was taken away from him by sickness. And as soon as I started to recover from an illness that left me bedridden for several months, not leaving my room, not caring for my baby, he was usurped from the position of baby and was replaced by two very high needs babies. But he was two. He was still a baby.

I had three baby boys who needed me and he didn't have words and his brothers' dramatic and chaotic arrivals in our family really affected his heart. But he is shining and growing and wonderful. He is quite literally feeling the love, which for those of you with kids with fear, is the most life affirming wonderful thing to see in a child.

Cookie, you still tell me in private and where everyone else can hear I only love Mama. Only her. No one else. (I tell you to love everyone, but in my heart, I love that I am still your favorite.) You are the best hugger in our family. Your need for physical affection is matched only by your mother in this house. We are made for each other and every hug and kiss you give me is like a balm to my soul. I will never tire of them. Ever.


You kicked your paci habit this year but still sleep with your blankies and you can have them as long as I am living. You often sleep with your hard plastic animals like gazelles, lemurs, and giraffes. You kick the covers off every night. You eat a pear every single night in bed. You cannot sleep unless you've eaten a piece of fruit. You eat about four pears a day, and when I say no more, you ask for an apple. You are a phenomenal eater. You love Ethiopian food, smoked salmon, swordfish, sushi, Indian fare. You can handle funky as long as it does not involve sweet potatoes or butternut squash. This makes me crazy since you eat everything else.

Sometimes, I wake up in the morning and you are sitting in the hall quietly leafing through our collection of books. You are on lesson 27 of Teach Your Child to Read in 100 Easy Lessons. You can read. Real words, by yourself. Twice last week Sissy was reading to me and you were following along and you sounded out some words. We all freaked out with shock and you couldn't stop laughing with joy. I am insanely proud of you for working so hard and trying so hard.


Your favorite literary moment thus far in your life came by way of Roald Dahl. When Fantastic Mr. Fox jumped through the floor boards into the chicken coop he hollers Hallelujah hurray! And then describes the mayhem of chickens running around calling them stupid. When I read this out loud to you you almost peed your pants laughing. Partly because I said a bad word. You now have surmised that as long as it is quoting, the word stupid is allowed. You quote Mr. Fox daily.

You hope to become a lemur dad someday. You want 100. You want to live in Madagascar with me and the lemurs. I am all about this. I asked you yesterday if you had to pick between loving lemurs and loving dinosaurs which would you choose. You said "Both. I love two. Not choosing one." I bugged you for several minutes and you refused to choose.

You tie knots. All the time. Cords, ropes, blankets. You tie knots and make rope creations all the time. You have taught Tsega the joy and I cannot abide it, except when it's funny.

You despise getting dressed for church on Sunday, and throw a fit like clockwork. You are highly irreverent at church. I look forward to this phase ending.

You love t-ball and soccer and are starting to find some speed in your run.

You cried in Lassie, Black Beauty, Bambi, Spirit, and you told me Mom, for Friday Night Movie Night, can we find a movie that isn't mean? In Lassie, when the boy had to tell Lassie that he didn't love her anymore and that she was a bad dog and had to stay with her new owner, you knew it was a lie and you sobbed uncontrollably at the unfairness. You had to leave the room. When Black Beauty was beaten by mean owners, you turned to me with tears streaming down your face and said Maybe he can dream of his mother galloping in the meadow and feel happy again. 

Cookie, I love that you feel so deeply. I love that your suggestion for Black Beauty to feel better involved thinking of his mother. I love that  injustice breaks your heart. I love this in you and what it will mean for you as you grow older.

Today at the park you pushed Brady in a swing for me, smiling at him and helping him giggle. I love seeing you grow into a nurturer with your rowdy little followers. I am so lucky to be your mother. I am so blessed to be the recipient of your esteem and love. You were my first boy.You will always be my biggest boy. My only kiddo with blue eyes like me (which you love). My only Cookie.

You are amazing. Happy number four.

Wherein I Freak Out

Chaos has reigned today.


The unexpected has happened. No, not Brady learning how to climb up to the table and put on dinner theater.


We got our court date. Samantha has a message for her Grandmother, who is needed like, in five days. Because we are leaving in nine.

(it says "Grama Jane, we got our kort dat, com know" showing all the fun they are gonna have)


Turns, out, June is speeding right along. We are coming, girlies.

Two Years

We met Tsega two years ago. We waited in a tiny dark room with other parents while each child was brought in by a nanny, to have their lives changed forever.



I was 26 weeks pregnant with his brother. He was so tiny and frail. I was frail too. He was ridiculously sweet. And shockingly happy to have us.



He teaches me every day how to be a better mom, how to let go, how to live. How to breathe and feel deeper.



Ewudehallehew yene q'onjo. You are so wonderful and so brave. You are so special to me.

"Don't talk, write..."

One of my childhood heroes, Ray Bradbury passed away this week. I remember the first time I read Something Wicked This way Comes in seventh grade. It scared the crud out of me and I loved that feeling. I remember my dad giving me Farenheit 451 and The Illustrated Man years before a teacher would assign them. Ray Bradbury was my gateway drug into sci-fi. 

Mr. Bradbury inspired me posthumously today as I read articles about him and reread quotes I'd forgotten; I felt like a friend was speaking to me from his resting place. Smiling through a few tears I found again

"Jump, and you will find out how to unfold your wings as you fall."

"You must live feverishly inside a library. Colleges are not going to do you any good unless you are born, raised and live in a library every day of your life.”  


“Don’t talk about it; write.”


Heavy matters on my mind, I know that my friend is right. I am pitiful when I speak. I am slightly better at zeroing in on the problem and perhaps that much closer to resolutions when I write. So write I must.

The knowledge that there are two children in the world that are supposed to call me "Mom" at some point threatens my ability to cope. It lingers on the fringe on my mind and it interrupts my flow, my intention and my sanity.

I am just now realizing this.

They are not here. Not in my house. Don't know me. I can't do a thing to check on them, prepare them, soothe them, talk to them, care for them. Nothing. The time until I meet them is -despite the ridiculously long days I endure with the waiting-to-hear-anything- fairly short. A month maybe. Two maybe. And my Amharic is abysmal. I have the vocabulary of a one year old. With less comprehension. I don't feel like I have time to do anything to get ready the way I'd wanted and hoped. If we'd waited for a referral, we would have had twenty or more months of biding time, and I had planned on filling that time with language acquisition to the maximus. Instead, we picked them out of a line up of sweet ones waiting for families, and this "rush" is making me panic.

Also stressful is that I thought Tsega and Brady would be older before anyone else joined our family. I thought they'd be less shouty. More in a groove. Why? Why would anyone with parenting experience imagine that two-year-old boys (with or without special needs) would anything but shouty, fighty, incomprehensibly dangerous, whiny, exuberant, belligerent masses of testosterone? Don't get me wrong, I like them a lot. Which is why I keep going outside to play ball with them.  I fetch the balls that they hit off the tee. And basketballs that go through the hoop. And I think about laundry, dishes, books I want to read, toe nails I'd like to clip and paint, anything but be the ball girl. But I love them, so I chase balls. Over and over and over again. And I try not to cry when they bring me worms and rotted animal carcasses.

I really don't know why I pictured a home for these girls that is serene. We are about as serene as car crash. There are so many people to altercate with, the options are almost limitless! There are so many opportunities for someone to get jilted, or hurt or in trouble. Sometimes, it's no one's fault. It's a slammed hand in a door, a stubbed toe. Not enough granola bars to go around, or the printer is out of paper right when one person's coloring page was supposed to come out. Sometimes I would like to put shock collars on them every time they reach for the couch cushions. Surely a buzz from such a tool would teach them faster than my shrieking from the other room So help me you better NOT be pulling the couch apart again. Put it back NOW. NOW. Get the cushion back up there before I come in there! Even on our best days, it's freaking noisy around here sometimes. And I don't always have control.

It gets better slowly over time, but well, it is slow.

I want the girls to have peace. Heck, I want to have peace. They are gonna have so much to take in, so much to learn, so much to endure, so much to grieve. On days when the children are acting like I've fed them speed for breakfast and behaving like our home is a UFC championship, I think holy cow what have I done. What are they going to think of this nonsense. What if they feel like I don't do a good job of taking control of the boys by 'whipping them soundly and sending them to bed?' I bet their mom wouldn't put up with this crap. 

I fantasize about the parenting they are used to. I think about what expectations they have for what moms and dads do. I mean, they have parents. It's not like they don't know what family means. But they don't know what our family means or how we do it.  And not only are they moving from their culture full of it's complicated verbal and non-verbal cues and gestures and implications and understandings into ours with totally different cues, gestures, rules, etc , but they have to pick up our family culture, without context and without language. I am giving myself hives just thinking about how difficult this will be.

If I am honest, I don't always refer to them as my daughters. Because in some ways, they aren't yet. We don't have a court date yet. Their mother hasn't been interviewed by the court yet to make sure it is something she wants. She might say no. The judge might find a reason that the adoption should not go through.

Thinking about them, worrying about the what-ifs, worrying about their mom, worrying about them, imaging how they fare from day to day, not knowing what they think about their future, not knowing what crap goes down in their care center (because no matter how good an orphanage or care center is, crap goes down. I am of the habit of filling in the unknowns with bad-case-scenarios. I don't call myself pessimistic, just conservative); The stuff of unknowns and worries and Holy Cow they are Real People with Real Lives and Real Problems Which are bigger than most kids have to face, and I am supposedly going to be their Mother and right now there is nothing I can do but wait to see if I am going to actually be their mother...

This stuff makes it so I can't think. I can't live in the moment. I can't focus. I start getting tense when my kids are acting obnoxious, ya know, totally age appropriate, because this little hateful voice whispers The girls can't come home to this. You have to stop this. End this kind of behavior. Why haven't you figured out how to get them to stop without raising your voice despite constantly revisiting this weakness in your parenting?

Then I raise my voice to make them stop, and then the voice says If you had yelled like that when the girls were here you just made it worse, you triggered their anxiety and trauma and none of the kids are going to respect you and now you have to undo what you've done.

Make no mistake, I do not berate myself. I am really trying to analyze what I -and the kids- do now, and how it will change, and what we need to do better and I am trying to prepare myself for better parenting because the children currently in my family need me to not suck every bit as much as the ones that are coming.


I am fearful and tense lately which makes for a crappy mother. Kids, please act all regulated and 'with it' while I lose my crap and overreact to unimportant things. Ignore the hypocrisy thankyouverymuch. I feel like I need to unplug a little. I can't continue to see their faces hovering above every skirmish among the kids and every moment I handle badly. I have to be more in the now with the kids I do have under my roof.  I need to pray for peace for the girlies , peace for me, and then disconnect a little. Because darlings, I will steamroll a mountain for you if and when it becomes necessary. You are in my heart all the time. But I can't protect you right this second. I am gonna ask God to send some angels to do that for me. And I am gonna try to do my best over here.


And who grew up in a perfect family anyway? Can you tell how all over the place I am? The contradictions and thought-jumping within this post indicate where my head is at.

I need more yoga. Less live wire emotion. More living. Unplug from adoption for a few days. Plug into God's promises that I can be peaceful if I trust him. Breathing...


Rest in peace, Ray. Thank you for your life.

Unwanted attention and the fight for diagnosis

Forthcoming are pictures of my children and some friends at a local butterfly habitat. This outing had potential to be spectacular. The place was beyond lovely, the butterflies were plentiful and active. But I had an uneasy feeling the whole time.

OK, actually I had a slowly building pain and anger the whole time. I am still not at peace with it yet. That is why I am including pictures from the trip. They are blunting my frustration.



The small space was packed to the gills with at least five field-trip groups. It was chaotic and did not feel very peaceful for a place that looked like some kind of enchanted sanctuary. It was far too crowded to bring in a stroller, which meant I had to choose to carry one child. I had to choose which toddler was more likely to have his health threatened via stampede and let the other one meander the paths with the bigger kids.



For much of the time, I chose Brady to be in the carrier. Tsega swore with heartfelt conviction that he would be good. And, really, he was. He didn't kill any butterflies. He didn't go off the paths into the shrubs to follow any "prey." He didn't scream or act wild. He was excited, happy, energetic, but he kept his crap to.geth.er. In a miraculous, regulated way that perhaps only moms of kids with sensory processing issues can appreciate.



His efforts were not enough. My poor baby was oblivious to his stalkers, though his mother was not. He was followed around the entire time by staff. There was probably sixty kids in this little habitat, and many of them were rambunctious, but somehow the staff was fixated on my son as the one that had the most potential to wreck havoc and destruction.

It wasn't all in my head. My friend confirmed that my observations weren't hypersensitivity or paranoia- clouded delusion. They watched my kid like he was a ticking time bomb. They literally followed him. Only twice did they point out that that he was about to do something that was dangerous. He didn't actually do anything. He just looked like it. It didn't feel very good, especially because I wanted to praise him out the yin yang for his super human efforts to control himself.



I thought What the heck is wrong with you people? Can't you see this little boy is magnificently regulated right now? Back off or I might accidentally punch you in the face.

But that is the thing, they couldn't see it. They don't know him. They couldn't seem to see anything but a potential trouble maker. There is something about his walk, his body language that looks like a cat about to spring. He is so agile and athletic and strong and balanced you really don't know which way he's gonna go next and it might just be to jump up on your face like a rabid raccoon. Or moonwalk up the wall. Or topple the entire establishment, or hurt a butterfly while he runs past in joyful appreciation of the beauty around him.



The good news is that I had my wits about me enough to realize it wasn't race related. Because if I'd gotten a whiff of them singling him out because he had brown skin I might have thrown a massive fit. But it wasn't his color. Some kids with sensory seeking behaviors or sensory processing disorders look like naughty, rambunctious, can't sit still and just chill kind of kids. Why? Because they are not chill. And much of the time, they can't be still.



On one end of the spectrum, colors, people, noise, smells can be totally overwhelming. Tags in shirts, a ruffle, an uneven hem on clothes, shoes that fit too loose or too tight, or carpet that is too scratchy can drive these kids up the wall or even cause pain. A jostle in line for a water fountain from another child passing by could be enough to send some children over the wall into panic mode. Moving too fast, swings, car rides, loud noises can be disorienting. These kids are hypersensitive to things that you or I might not even notice. And it fills their brains with sheer chaos.

On the other end, some kids can't get enough sensory input. Almost ever. This is called hyposensitivity to touch and movement. Kids may crave touch, need to touch everything and sometimes everyone. They are not aware of being touched/bumped unless done with extreme force or intensity.  They are not bothered by injuries, like cuts and bruises, and shows no distress with shots. May not be aware that hands or face are dirty or feel his/her nose running. May be self-abusive; pinching, biting, or banging his own head. They may mouths objects excessively.  Repeatedly touch surfaces or objects that are soothing (i.e., blanket). Seek out surfaces and textures that provide strong tactile feedback. Thoroughly enjoy and seeks out messy and dangerous play. Craves vibrating or strong sensory input. Act as "thrill-seeker"; dangerous at times, may always be running, jumping, hopping etc. instead of walking. In constant motion, can't seem to sit still. This child may crave fast, spinning, and/or intense movement experiences; could spin for hours and never appear to be dizzy... The list goes on (actually literally: a sensory processing check list for education purposes.)


I have a hyposensitive kid who doesn't often register pain and is in almost constant need of input coupled with stunning coordination and strength for a person of his size and age.


Kids like mine are not always easy in a group, or public. Add in anxiety from early child-hood trauma and the Butterfly Place folks aren't that off: sometimes it does feel like I have a little ticking time bomb.

In school kids with sensory issues are not seen as such. Take a wild guess what these are are labeled as? What is the easiest thing to throw drugs at? Say it with me now:  ADD or ADHD.  These kids get labeled as trouble makers sometimes. They attract attention even when they don't want it. They don't always regulate themselves well.  They are watched and followed, mocked by other children because it isn't a matter of If, it's a matter of When they will break a rule or make a scene.

But my kid, and any other with sensory issues don't need judgement and to be followed. They need compassion and help. Their families need training and help from therapists on how to deal with their child's special needs and help them to do well in social situations and to be self-confident and successful in spite of their sensitivities.



My son isn't a trouble maker. He isn't out to cause problems.  He is a canon of joy and fun and good gosh life will be a little easier when he is old enough to put on a football field because he is fast and can take a hit no problem. Sports will be a great way to channel the ants in his pants and his need for thrills and movement and impact. But until then,and maybe even then kids with sensory issues need therapy. But the medical community resists diagnosing sensory issues. I recently read this article from the American Academy of Pediatrics. If you don't want to wade through the entire piece, in short it is a smack in the face to families with kids struggling due to sensory issues. It warns in technical medical jargon: Don't diagnose this. It's not a stand-alone condition. It is a symptom of something bigger, like Autism. And we don't even know if therapy works because it hasn't been *proven* to work! Boogity Boogity Boo! It's a fake condition!


This pervasive avoidance by the medical community to look at sensory integration disorders is so bad on so many levels because it's already very difficult to get insurance to cover therapy needed for sensory issues. Painfully bad. Kids who really really need it can't get it. There are folks out there working to right this.
But it feels like a losing battle sometimes.



To me, a nobody mom who doesn't know much about the ongoing battle to get this condition listed in the DSM , I think it's clear that there is so much to be gained, in a money-kind-of-way by not diagnosing a condition that requires occupational therapy and not drugs. It's obvious to me that it behooves pharmaceutical companies and  insurance companies to not call it a real diagnosis so we don't have to cover it, because oh crap if we have to it doesn't need meds, it needs people, therapists! And those therapists have to be paid! This is not very profitable at all!

My friend Susan on a Sensory Seekers support group said

"The closing paragraph of that article stating that: Pediatricians should inform families that occupational therapy is a limited resource, particularly the number of sessions available through schools and through insurance coverage” has INSURANCE COMPANY INFLUENCE all over it. How stupid do they think people are? Or mothers – more specifically. 

There is still a fight to get it into the DSM manual in the future but in the meantime it’s interesting to me that they seem to want it to be a *co-morbid* issue rather than a stand-alone diagnosis. It’s like determining which came first the chicken or the egg? It’s also interesting to me that they believe that sensory problems are an age related issues since it’s an acceptable diagnosis in early intervention up until Kindergarten. An example of this is I just came out of our “Turning 5” process this morning with the Department of Education and one of the issues we have with my son is self-regulation and focus during large group time or circle time. So prior to kindergarten it would’ve “too much sensory input to regulate” but now we’re looking at “attention disorders” aka code for ADHD which is just pure nonsense because we don’t have the same problem in a smaller group setting. In school they are so under-educated in sensory issues that the classroom they want to put him in for kindergarten is the perfect setting for his SPD to thrive!! LOL. They just don’t get it.

Does anyone else find it incredibly alarming that we are seeing more and more neurodevelopment issues both with our adoptive kids and our bio kids? I’ve got to believe the pediatricians are seeing it too. And yet no one is asking why and now it seems as if they’re not really interested in real  treatment. 

Unbelievable that we’re living this every day and can’t get support. Because parenting a special needs kid isn’t stressful enough. All I can say is don’t take No for an answer. Figure out how to work the system – and put on your mommy warrior hat. Expect a fight every time and know you’re not crazy. There are a lot of moms out there (and dads) who are living it and OT’s and other professionals who are helping and supporting."





Another wise Mama of a sensory seeker said in response to reading that article:
"Let me preface this by saying that I have a rather negative opinion of drug companies and their unethical relationships with many physicians, the government, etc. So when I read it, my first thought was that since the primary method of treating Sensory Processing Disorder as a stand alone condition is with occupational therapy rather than meds, it comes as no surprise to me that there is a push to attach SPD to another condition whose symptoms are often lessened with the introduction of meds. I am in no way anti-med where justified, but I feel that overwhelmingly it is pushed too heavily over other less invasive and potentially more effective methods such as diet changes, new parenting strategies, and therapies."

After several days (well, the last few months) of support for one another, ideas, and a small amount of grumbling, a breath of fresh air shedding a softer, honest look at sensory issues emerged. It shares a perspective that I'd never considered. And it really makes sense. Dr Claudia Gold says in her response to that crock-of-nonsense article from the AAP,

As in an Escher Print, there may be a completely different way to see this issue from that offered in a new policy statement from the American Academy of Pediatrics on the role of sensory integration therapies for children with developmental and behavioral disorders. The statement cautions against using the diagnosis of "sensory processing disorder," because these are most likely symptoms of some other disorder such as autism or anxiety.

But I wonder if, as we learn more about the genetics and neuroscience of mental illness, we will find that the sensory processing issue is primary, and we simply organize the range of symptoms that may result from this problem into categories, in the form of diagnoses such as autism, OCD, anxiety and depression. These may in fact all be regulatory sensory processing disorders.

Sensory processing is intimately tied to emotional regulation, and our ability to manage ourselves in a complex social environment. The world may feel soft and inviting, or harsh and dangerous...

I wonder if we should we abandon altogether the search for a "disorder," and instead focus on understanding a child's experience of the world and helping him to make sense of and manage that experience. As I have said many times on this blog and in my book, Keeping Your Child in Mind, children do well when the people who care for them understand them, and can see the world from their point of view. If we stay focused on this task, then a label with a "disorder" becomes necessary only for the insurance company... (Read the rest of her article here).


The part that stands out to me is where she suggests we focus on a child's experience of the world and helping him to make sense of and manage that experience. I do believe that working with knowledgeable, nurturing therapists is an integral; necessary part of that task. And for now, I am lucky we have access to them. I am ready to fight some fights later when my little guy ages out of Early Intervention. I am pulling up my bootstraps. I will find a way.



So this is what I must do: Help my kiddo make sense of his world. And not worry too much about the people that make a fuss when they don't like what he's doing or how he behaves. He is an exceptionally brilliant, wonderful child who one day may win a Gold Medal or a Heisman. Or not. But either way, forget you, Butterfly Place. 

Powerful

What do you do when you spend one hour packing lunches and dressing four kids, drive into Boston, park 1.2 miles from intended destination, only to discover that the stroller is NOT in the car? Can you join me in that moment of horror whiled the children are all clamoring from their car seats to be let out immediately, going around to the back of the van, lifting the door and the great void of no-stroller-ness washes over me?

I don't know what you would do, but after a deep breath, I said  Aw heck no, we are not turning back. We are doing this. Thank God I have two Ergos in the car right now. Cookie, Samantha! Gird your loins, you are about to do some walking. Far walking.

I had to leave behind the picnic blanket. And one of the diaper bags. And the massive camera. But we made it to the Boston Public Garden just in time to see the yearly release of the swans back into the pond. You know, the famous Swan Boats pond in Make Way for Ducklings? It's one of my favorite spring time traditions.

It was magical. And a work out. Four people that day who saw me hauling a huge bag and my little crew through the streets of Downtown Boston said You are powerful.

Thank goodness my buddy Jamie had her camera to capture the madness.
I spent the *entire* time trying to keep Brady, Tsega and Cookie from going into the pond. 


Packed up, read to tackle the mile journey back to the parking garage. My arm looks really large in this photo. Now, if you noticed, you don't have to feel bad because I noticed too. Also, I am so done with bangs. They aren't listening to my daily requests to just grow out already.


I didn't mind the staring and the comments. I felt powerful. I felt determined. It felt like it was a metaphor for so much of what I try (and often fail) to do. No matter what impediments and surprises and difficulties arise I do not ever want it to stop me. I won't give up.

Ever.