real life conversation...about brotherhood

the scene:  while sitting at the breakfast bar eating a snack; out of the blue.


graham: life is so disappointing.

me: (chuckling) really? why is life so disappointing?

graham: always having to take care of my older brother.

me: (no longer chuckling)

the bible says "how good and pleasant it is when brothers live together in unity."

lately i question the balance between the good and the pleasant...

the things that don't feel good nor pleasant...

and the unity that can be found between the two. 

graham truly has been gifted with the unique ability to read a situation and adjust it to meet harrison's needs. this intuitiveness is special and will serve him well his whole life long. 

conversely, graham has become harrison's guide - looking out for, standing up for, speaking on behalf of, leading the way for, a comforting sidekick - starting when he was very little (younger than two). a job he took on himself and one i, admittedly, placed him in a few times too many. 

what does a mother do when her son expresses discouragement that his gift has become a burden?

 schedule counseling appointments then write a blog post, of course. :)

 ponder it; put the question out into the universe and pray for an answer. 

 sit with him in life's disappointment. 

 teach him to think on the positive aspects of his relationship with his brother. 

show him unity isn't a treasure to be found...

it is beauty we must create.

the two year post-therapy mark

my oldest boy and i snuggled together this morning, taking turns sneezing and wiping sleep from our eyes. he watched cartoons, i sipped coffee. he wiggled around, taking his time getting situated and comfortable. he rested his head on my chest then slid down to lay his head on my hip. he rearranged my arms and placed them where he wanted them, where they felt best. he fidgeted with my fingers. he told me to squeeze him harder. i stayed there with him and complied.

cuddles aren't his favorite thing. typically i ask him for a hug or say "do you want to snuggle with me" and let him decide whether to oblige. i can get away with a pat on his back or a kiss on the top of his head but prolonged affection is not a regular occurrence.

but this morning there was no asking.

he simply sat down next to me and leaned in.

he offered himself.

all i had to do was open my arms to accept the gift.

.............

the truth is i've gotten plenty of snuggles from this boy; enough that i don't feel deprived or like a part of our relationship is lacking. but still, i do not ever take them for granted. i'm keenly aware in those moments that cuddling with this kid is a privilege.

it's because he trusts me.

he feels comfortable being himself with me.

i feel honored.

..............

this summer is the two year anniversary of harrison's graduation from STAR center. this is what i wrote about the one year anniversary.

you may have noticed, i've stopped blogging about sensory processing disorder. it's been a purposeful decision. it's one part because there just isn't as much emotion for me to release, one part because there just aren't as many sensory issues to talk about, two parts because my sweet boy is getting older and while i'm still likely to write about him and the things we do together, i want to be more careful about exposing the serious stuff to the world.

it's his story to tell.

if he wants to, when he wants to.

................

but what i would like to say is this: i am so stinkin thankful i get to be a mom to this boy. i adore who he is. i love every little snippet of his personality. i am in awe at the amazing things he does.

he is just such a great kid! a smart boy, a brave boy, a loving boy, a kind boy, a strong boy, an honest boy, an active boy.

yes, he's a boy who gets motion sickness. he's a boy who hates handwriting. he's a boy who makes the term picky-eater an understatement. he's a boy can rarely catch a football.

but there is not one single sensory issue that hinders who he is as a person. 

he is not an either/or situation. he is not one thing in spite of the others. he is all the things.

my son is a mixture of so many beautiful characteristics which mesh together to create a masterpiece so stunning that sometimes, just by looking at him, it brings tears to my eyes.

switching schools

let's chat about these cutie-patooties for a moment, shall we?

jeremy and i decided to transfer the boys to a new school. it was a quick decision, an abrupt change, and one of the best things we've done in a long while.

the first day of school was monday, august 18th. three days prior, at the school's teacher meet & greet i developed a couple concerns about graham's kindergarten class. specifically, the number of students was high (to me) and his teacher seemed a bit overwhelmed. i was really pleased with harrison's teacher, his class size and his classmates; he had quite a few good friends in class with him. even so, these small worries about graham's class were enough to make me chat with a teacher/friend who just happened to mention a new charter school that "i could check out if i end up feeling like the kindergarten class isn't a good fit for graham".

well of course i checked it out that very afternoon.

and i liked what i saw.

on the boy's first day of school i called the principal of the new charter school and asked to schedule a meeting with her. on their second day of school i did some research about classical education, sent some messages and texts to people who chose that type of education for their children, and called my mom (a career educator) to get her thoughts. on their third day of school i met with the principal, loved her, took a tour of the school, began to fill out transfer paperwork and sat down with jeremy to make an official decision. on their fourth day of school i began the process of un-enrolling and re-enrolling them. that night we told the boys they would start attending a new school the following week and tomorrow (friday) was their last day at their current school.

graham was fine with this decision, he'd only had four days of kindergarten at this point and he wasn't attached. harrison cried. mostly, i think, because he was going to miss his first grade teacher, ms. johnson, and the comfort she provided him. it was a super hard conversation to have with harrison, especially because he was hiding under his bed and covering his ears. ha! i had to climb under the bed with him and gently explain that his daddy and i understood how hard it was but we were doing what we thought was the very best thing for him and, ultimately, he had to trust us.

and, ultimately, he did.

so on what would have been the sixth day of school my boys started their first day of school in a brand new, sight-unseen environment. new building, new uniforms, new school supplies, new teacher, new classroom, new friends, new everything.

and they have both done SO WELL with the change.


with special regard to harrison, here are the improvements i'm noticing in him that are a direct effect of switching his school:

- he tells me SO MUCH MORE about his day! i've heard more from him (about what he's learning and about how his day went) in the past couple weeks than i did all last year. this is a huge difference! i asked him why and all he said was "my old school was boring". i took that to mean that he feels more engaged at this new school...but there might be another reason too...

- his body (we call it his "engine") isn't crazy busy after school anymore! last year when harrison would get home from school he would completely crash, totally exhausted from the day. the only thing he'd want to do was watch cartoons. i would let him for 30 minutes or so but as soon as the tv turned off he would go crazy. running around the house, loud voice, unruly, disobedient, defiant, throwing pillows, crashing into things... it didn't matter if i got him outside to play or if i tried sensory-stimulating activities or if i tried sensory-calming activities...his engine was out of control. and don't even get me started talking about how incredibly difficult it was to get him to do his homework - such a battle that i often lost!

the long school day is very hard on him.

BUT, at our new school, they believe in movement. they believe, and research shows, that movement helps stimulate the brain for better learning. and you know i agree with them wholeheartedly, which is why we so quickly decided this was the best place for our boys to learn.  harrison now has p.e. every single day, he has music every single day, he has recess AND he has a curriculum that allows for movement within the classroom throughout the school day.

now when he gets home he still wants to watch cartoons for 30 minutes or so but turning the tv off is no longer an issue. it's no longer war to get homework done. he actually holds down a conversation during dinner. he hasn't thrown anything or been unruly or defiant. sometimes he still seems a bit "busy" to me, but it's not out-of-control busy. and on top of all that he has been able to verbalize how he feels about things that happen at school. this is amazing to me! my son has gone from being a zombie during the ride home from school to being an engaged little boy and for that i am so very thankful.


with special regard to graham, he is a champ. his teacher uses an app that allows me to see how graham is doing at school each day. he has had 100% positive comments so far. his teacher sent me a text this week telling me what a joy graham is, how he is such a good role model for his classmates and how she uses him as an example all the time. he is thriving and for that i am so very thankful.


we could not be more thrilled with the positive results we've seen since switching to addenbrooke classical academy. we are so excited to be apart of a school that supports the whole student and has established an environment in which they thrive.

the one year post-therapy mark

july 24, 2013 was harrison's last occupational therapy session with juliana at STAR center. i wrote about the emotions of that day HERE.

it's been nearly one year but it feels like a lifetime ago.

harrison has changed quite a bit since then. i've changed too.


i'll start with myself...

i don't cry nearly as much.
i don't obsess about his quirks nearly as much.
i don't worry about him as much.
i don't worry about his future as much.
i haven't sent panicked text messages to his OTs in a long while.

i still - probably always will -  carefully think through how certain things/situations/environments/activities/food will affect him and do my best to prep him for those. BUT he almost always surprises me and surpasses my expectations, a sign that i could probably loosen up on the detailedness of my prep work just a little bit.


as far as sweet harrison...

my friend, amy, who's been by my side since the very beginning of all this commented last week about how great she thinks harrison is doing. she noticed how much he is talking and how well he is interacting both with kids and adults.

ms. johnson, harrison's first grade teacher, commented that since he had his tonsils out he is like a new kid. she said he asks lots more questions and communicates much more freely/easily. (i do think it's quite likely that the pain and irritation of his nasty tonsils was preventing him from being his full self).

he is able to watch movies. this is a big one. it was one of our main goals for therapy, believe it or not. it may sound silly but typical kids can watch most movies without even thinking about it. we wanted that for harrison too. if you remember back, attempting to watch the lion king movie was my first indication that something wasn't quite right with him. in the year since therapy has ended we've watched more movies than in the previous six years combined. harrison frequently boasts, while the credits roll, "well, that's another one i can check off the list!"

he does not get motion sickness anywhere near as much as he used to. again, this feels huge. it used to be harrsion would get sick once or twice during a 30 minute drive up the highway to meme and papa's house. lately we've been driving back and forth from the mountains (a 1-1.5 hour, curvy drive) and he hasn't gotten car sick in a very long while (with the exception of one day when he had a stomach virus). i've also noticed he seeks out the spinning playground equipment and doesn't have any trouble handling that at all.

i've noticed his ability to interact with kids his own age improving. he still has some trouble standing up for himself at times. he also still has trouble understanding when kids are just joking with him or being hurtful. i wholeheartedly believe these are things that will come with time and practice. the bigger point is that he doesn't shy away from verbal exchanges as much. just this past weekend he was playing at the park and a girl his age came to play on the same equipment as him. old harrison would have walked away but today's harrison stayed, played and actually laughed and talked with her!

harrison and the girl at the park.

confession: i might be crying just a little bit right now.

he is brave, stretching his wings to do things on his own, not wanting to cling to me anymore. a great example of this was his willingness and actual desire to be left at chuck e. cheese to navigate a friend's birthday party in a new environment all by himself. and he did awesome. yesterday i watched him perform well during a group swimming lesson in a loud, crowded pool - amazed.

he is better able to recognize his feelings AND he is better able to tell us about it. we still have quite a ways to go in this area but i am always impressed when he makes baby steps in the right direction. anger is easier for him to deal with than sadness or shame (if he hurts someone and has to apologize). i'd say that is true for every human being. he says "i love you" freely now. it's not every day but when he does say it it's sincere. he even says "i love you more than you think i do". that one gets me every time.

he is better able to handle touch. and, maybe more importantly, he is better able to tell us how he likes or doesn't like to be touched. mostly this arises between him and jeremy in the form of "your whiskers are too scratchy" or "you kiss me too hard" or "no hugs". i am so incredibly proud of harrison for expressing his needs. he will tell me, too, that he doesn't want to be hugged or, sometimes, that he needs squeezes and i accommodate. i've learned how to touch him in a way he finds comfortable so he trusts me. jeremy is still working on building that trust with harrison.

there was a boy in his class last year who was always hugging on harrison and we had to figure out a way to deal with that. harrison said, "i need help telling him to stop" (so proud that he was able to ask for help!) so i spoke with ms. johnson about it and she helped him talk to his buddy. situations like that are milestones. old harrison would have just stood still as stone in freeze mode until his friend got bored and went to hug someone else. today's harrison understands he is allowed to have an opinion about what's happening to him, he is allowed to express that opinion, and he is allowed to seek help if he needs it.

he is able to talk for himself now as opposed to me talking for him. 

i am noticing more abstract, imaginative thinking from him. the other day, in a group of friends, we were talking about an orange tabby cat that typically roams the neighborhood. none of us had seen the cat in a while and harrison said, "maybe he turned into a black ninja cat" and we all laughed. stuff like that never would have happened before.

...


there are more details i could share, more improvements i've seen...i think what it comes down to, though, is that we've found our "normal". we've found that place where life is moving forward and we aren't racing to keep up. we've reached the plateau on this journey, the place where we can catch our breath, look up and enjoy the view for awhile. and, listen, i know there will always be hills and valleys but it's so lovely to recognize this season of smooth passage.

today harrison knows he has a "really smart brain that works a bit differently than other kids' brains". he knows he has "superhero sensitivities", a really strong sense of smell and taste and hearing and touch. i haven't noticed any negative self-esteem issues with regard to these characteristics, he seems to just accept this is the way he is.

that's my always prayer for him and for me and for each of you - that we would all be able to accept and love ourselves (and each other!) just as we are.

and if you are on a journey today i pray you find your plateau soon.

playing RISK - an opportunity to create circles of communication

i'm not sure how it happened that i still don't know how to play the game risk. my dad and my godfather played it nearly every time we got together with them, which was most of those monday holidays - labor day, memorial day, presidents day. we lived closer to my godparents, larry and cindy, than to any of our relatives and we spent a great deal of time with them. they had kids similar ages to my brother and me; three girls - hannah, sarah and leah - so my poor brother was outnumbered four to one but he didn't seem to mind. my parents and the soderbergs were friends long before kids came along and their friendship is still strong today long after the kids have left. they are one of a handful of families who have left a forever imprint on my heart.

i loved spending those holidays with them. whether it was at our house or theirs the visit typically included a big pot of soup on the stove and loads of junk food to be grazed throughout the day, twizzlers and fig newtons are the two i remember the most. us kids would play, the moms would talk and the dads would challenge each other to a long game of risk.

it was always just what the dads did and i never had any interest in learning to play.

the first christmas after jeremy and i were married was an interesting one. when we were dating jeremy was very thoughtful and generous in choosing a gift for me. after we were married, however, he went out to shop on christmas eve and on christmas morning i opened five different packages, all board games. one of them was risk. my sweet husband was attempting thoughtfulness, thinking it would be fun to play games together, but i sightly less than impressed.

monopoly, yes.  
scrabble, okay.  
acquire, never heard of it.
clue, yes.  
risk, you gotta be kidding me.

over the years jeremy and i have played lots of monopoly. we love playing clue with his family (i always get to be miss scarlet and jer's mom is always mrs. white). jer's brother, zach, loves the game acquire - who knew?! but risk has set on the shelf untouched.

until harrison asked to play it.

 here they are "playing" risk at christmas time. yes, they are wearing their ski helmets.

risk is recommended for ages 12+ but one evening jeremy pulled the box off the shelf and "played" with the boys (they made up their own rules) and all three of them had a great time. i still never participated, though, until yesterday. and when i finally did play, do you know what i learned?

playing a higher level game with younger level or inexperienced players is an awesome therapy activity!

over the past year or so as we've been figuring out this thing called sensory processing disorder and how it affects our son and our family, if i had to pinpoint the ultimate lesson i learned from occupational therapists for connecting with kids - ANY kids, but certainly kids on the spectrum - it is this:

find out what they are interested in

whatever it is, do it with them

expand on it

harrison wanted to play risk with me last night.

i could have said "that game is too old for you" or "let's play a different game," but what i said instead was, "sure i'll play with you but i've never played before so you're going to have to show me how."

that was all it took - me, sitting on the floor with harrison, setting up the game he wanted to play and being (sometimes just acting) very uninformed about what to do.

i think it's safe to say i've never had more circles of communication with harrison than i did last night.

he loves teaching others. he loves being in control of a situation. he loves talking about facts, giving information, sharing concrete details.

i took those things i know about his personality and exploited the game of risk to get as much communication and interaction with him as i could. first i just played dumb and asked lots of questions. "wait a second, i don't get it, what am i supposed to do again?!" then i expand it to more open-ended questions, "i wonder what would happen if crossed this border?" then i expanded it to add emotion, "ah! no! i'm scared! don't shoot my men!" then i expanded it to role-playing and acting out what my little soldiers were doing, "you can't hide from me! i'll ride my horse across this desert to find you if i have to! but, oh, i'm so tired and i need some food and water..."

silly? yes, it feels so silly pretending to be an exhausted, parched infantry man.

but rewarding? yup. every time harrison responded to my questions, every time he looked me in the eyes, every time he laughed because i was acting so silly, every time he pretended to shoot his cannon and kill my troops, every bit of it was hugely, satisfyingly rewarding!

last night was a great reminder that my job isn't always to be the leader, the teacher, the one in charge. sometimes, most times, the best connection occurs when i follow my boys' lead and let them teach me a thing or two.

my dad is coming for a visit next weekend to spend president's day with us. i suppose we'll have to pull risk back off the shelf and let harrison teach him a new way - the best way! - to "play." making a big pot of soup and buying some junk food feels like a good idea too. :-)

2013: it was a rebuilding year

if i had known when it started what 2013 would bring i'm certain i would have booked a trip to tahiti and hidden in an over-water bungalow for twelve months. escape has always been my m.o.

the things is, though, now that the year has drawn to a close and i, once again, have hope for the future, i realize the tearing-down and rebuilding have been priceless in terms of my overall growth as a person, a wife, and a mom. i still have so much to learn and so many areas where i need to grow and there is still so much about which i'm unsure. but of this i am certain: had i run away and checked out on this past year, 2014 would look entirely different.

y'all have walked along on this adventure with me. you've read with teary eyes about my son's inability to express his love for me. you've read with overflowing hearts about the exhaustion of evaluations and treatments and decisions. you've even read snippets of my own emotional distress about parenting a child with a diagnosis. and even though i touched a bit on the depression i carried last winter, i never completely revealed to you the total break down that has occurred within me. and within my marriage.

there is an aftermath the occurs following diagnosis. an adjustment period. a leveling out. a transition to one's new "normal". i would venture to say this is true for any diagnosis - whether spd, autism, diabetes or cancer. i wouldn't dare to rate those different ailments on a scale of better or worse, but i will say this: when a child is diagnosed with a spectrum disorder it is often accompanied by a realization that one or both parents also suffer from their own spectrum-y issues. it's a double whammy.

the first eight or nine months of 2013 knocked us down and tore us apart. the clean up began in the last third of the year. 2014 promises continued maintenance on what was rebuilt...along with a positive outlook for continued construction and an abundant life.

now that i am - we are - in a better, more connected, more stable place, i believe it's important to talk about the break down. i have to write about it simply for my own understanding - my therapy. but also for anyone who might benefit from my honesty. "an unexamined life is not worth living" is what socrates said. i believe that. but i also believe we have to share what we learn because it's not just the examination that's worthwhile, it's the exchange.

an unexchanged life is not worth living.

i'm not sure exactly where to start. i suppose it's safe to say i had been feeling disconnected from jeremy even before the issues with harrison came to light. long before. i recall sitting across the dinner table from him back in september of 2012, after having been on a romantic weekend away that wasn't all that romantic, confessing that i'd felt disconnected for a very long time and begging him to stop working so much. so we didn't have the firmest of foundations when harrison was evaluated and his treatment became our primary focus. our marriage had not been a priority for quite some time but it really took a rear seat last year. jeremy focused on working to pay for therapy. i focused on getting harrison to and from therapy and learning as much as i could about how to help our son.

when parents carry sole responsibilities instead of shared responsibilities, a chasm occurs.

in our case it only made our disconnect wider.

as the year progressed and my research increased i began to realize how differently jeremy and i think. men and women, generally speaking, have brains that process in polar opposite ways. so there's that. but imagine you could rate your brain on a scale of "typical-ness"... on a scale of 0-200, i would be an 18 and jeremy would be a 143. a 125 point spread. disconnect.



“i was a math nerd in high school. i took calculus as a junior. i loved working with numbers because everything just fit. had i not gotten into computer networking i'd probably still be doing pages and pages of math to this day. i like it when everything fits. i NEED everything to fit. when things fit it's like my brain feels physically lighter and i get a brief moment of peace,” he said.


“but you fell in love with a girl who doesn't fit. she buys you clothes you don't like to wear. she cooks you food you really don't want to eat. she doesn't fold the receipts correctly, nor does she put them in order by date or by size. you have a wife who doesn't fit,” i said.


"YES," he exclaimed. 

it was a moment of clarity. i finally realized why i had felt ignored by my husband for much of our marriage. with a tear streaming down my right cheek i said, "it's much easier for you to sit in front of your computer, collecting and cataloging data, than it is to interact with your wife who doesn't fit.”

“yes,” he said, softer this time. a tear escaped his eye too. it rolled down his left cheek, creating a mirror image of mine.

i said the only thing left to say, “that's the problem, honey.”

this conversation took place in august. it was the first honest talk jeremy and i had about our marriage. it was the first time i understood the depth of our issues and the lengths we would need to go to save our relationship. 

even after this chat jeremy revealed that he did not feel disconnected from me at all. not even a little bit. my complaints about our marriage not only came out of left field, they hit him upside the head and knocked him to the dirt. disconnect.

in september i called a psychologist. i made an appointment for myself. i begged jeremy to go too. in fact i threatened him. go or get out. another disconnect. 

i spent the first three therapy sessions sobbing and blowing my nose and catching my breath. i spent the next three analyzing and understanding and focusing on change. changing myself. changing my thoughts. it turns out jeremy was not solely responsible for making me feel ignored in our marriage. my own thoughts - my deeply negative thinking about myself, others, life, the world, the things that happen to us - were a major factor in the disconnect that occurred within my marriage, but also within me individually. 

i signed up for counseling to deal with my son's diagnosis and to salvage my marriage when in actuality what i really needed was to rebuild myself.

although i wrote on this very blog about how i believe "everything happens for a reason" and "all things work out for good" and "this life is a great adventure...it's a journey", my internal thoughts were calling BULLSHIT! my mind was thinking "i'm exhausted" and "i can't deal with this" and "why do i have to do it all by myself" and "this is too much" and "i feel so alone." my mind was focusing on every negative aspect of harrison's diagnosis (because that's what i was training to do - notice his behaviors, figure out why he's acting that way, and modify my own behavior or the situation to help him cope). my mind was reeling with the unattractive pieces of jeremy's personality. and my own. i was everyone's worst critic, but i always saved the worst of the worst for myself.

i lacked the the energy to see the good. the inside of my brain was a mess with worry and fear and doubt and suspicion. and the worst part of all was that I HAD ABSOLUTELY NO IDEA I WAS THINKING SO NEGATIVELY. i had lost the ability to live a conscious life. there was no examining my own mind. i was too busy analyzing the external happenings around me - and interpreting them negatively - to even notice the wrecking that was taking place within.

what i began slowly, painstakingly learning in therapy is that i cannot live a healthy, productive life if i don't have healthy, productive thoughts. i cannot have a happy marriage if the loop in my head continually plays to me how unhappy and hopeless my marriage is. i will never have a right relationship with my son if i'm constantly reminding myself about all he has to overcome and worrying that he'll never be able to do so. cognitive behavior therapy has helped me recognize that, while i cannot control the events around me, i can control my reaction to them and my thoughts about them. 

jeremy and i have been seeing our doctor faithfully each week since late september - first separately, then together. he's given us assignments. i was asked to keep a gratitude journal, to write down three things i'm thankful for each day. i was told to monitor my thinking and to try hard to catch my negative thoughts and replace them with positive ones. i'll be frank with you, at first i had no idea how to do that. my therapist had to give me examples of positive thoughts! (i'm blushing; embarrassed at such a confession). one session he said, "rachel, your marriage is strong" and i remember being amazed at that idea. he went on to give me lots of examples of how jeremy is an awesome, competent partner and how harrison is an amazing, bright boy. ultimately, he showed me if i could simply change the connotation with which i interpret things, i'd see their incredible qualities too. 

i am far from whole. i feel as though my foundation - our foundation - has been shored up and our structure is sound. we've got a house that's liveable but we're still adding the special touches that make it a home. i do finally feel connected to my husband again. he has done an outstanding job of working toward regaining my trust and i am doing my best to trust him. we are showing up for each other. and that's a really powerful thing. 

i mess up every day. i still think negatively. and i still speak negatively. and i still hurt others. and i'm still hardest on myself. but at least now i'm trying really, really hard to forgive myself when i mess up, let it go, and just do the next right thing. i'm better able to catch my negative (worrisome, anxious, harsh, always jump to the worst case scenario) thoughts and replace them with good.

in 2013 i learned so much about my son. not all moms are able to say they know their child as well as i know mine. i'm not saying that to brag. but it sounds like bragging, doesn't it? and isn't it something to brag about?! i know harrison so well and i wouldn't have that deep, special relationship with him if i'd hopped a flight to tahiti. i learned about myself this year. how to be more of who god calls me to be - someone who's full of love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control. how to focus on things that are noble, right, pure, lovely, admirable and praiseworthy. how to tune out the lies and focus on truth. i learned things about my husband that hadn't before been revealed in nearly ten years of marriage. he and i are convinced our ten year anniversary celebration (and vacation!) will be all the sweeter for having walked through the mire these past months (and in the months to come). we are, more than ever, committed to each other and have reached a deeper level of understanding about how the other sees the world.

in 2013 i learned that diagnosis doesn't have to lead to divorce. 

instead, it can lead to discovery.

and the greatest discoveries in the world are the ones found right in your own back yard.

come what may in 2014, if i feel the need to escape to tahiti i'll be taking jeremy, harrison and graham with me. an over-water bungalow would undoubtedly be more fun if i shared it with them.

counting my blessings - november 25, 2013

number twenty-five

i am thankful for an intelligent god, who created human beings in his image - intelligently. intricately. masterfully. i am thankful for a god who allows us teeny tiny glimpses of his work - a bit of understanding about brain pathways here, a snippet of knowledge about the brain/gut connection there, a peek of awareness regarding how play therapy and listening therapy physically change the brain's "wiring". i am thankful for a god of transformation.


i am thankful for how harrison has been transformed.

he finished therapy in july.

he started school in august. he did not adjust well to school. it was not easy.

in september i was sending full-on panic mode, frantic text messages to his occupational therapists with statements like "should i be seeing WORSE behaviors since completing treatment? he had his worst meltdown EVER today."

he seemed so angry. he did not seem like harrison. i wondered what in the world had happened to my sweet, quiet boy.

i am thankful for rachel ottley who, after deeper discussion, texted back this: 

"he should feel things deeply - frustration, anger - because then he will feel joy and love that deeply too." 

that was all it took. that one comment and i was all in. no more worry or fear about what was happening inside my son. i understood then my task was to help him feel all his emotions deeply, help him identify what each one was and deal with it in an acceptable way. the rest of september, october and even now we are working on this. 

we are seeing transformation!

a couple weeks back jeremy and i picked up harrison from school and actually ended up calling him a chatterbox! my son, a chatterbox? we were astounded!

i was equally as astounded by the number of circles of communication he had with my dad while in iowa. heck, i'm still floored at the circles he has with me. while at church the sunday we were in iowa, harrison and i wrote notes back and forth during the entire sermon. question and answer kind of notes. conversation kind of notes. keep them forever kind of notes. 

the other day i was lying on the couch and he came over to me and held my face in his hands for no reason at all except just to touch. he reached out and touched me and held the touch. it was powerful.

he's asking for hugs. asking for hugs! transformed, i tell you.

last night he and i gave each other zerbert kisses back and forth a few times. it tickled him and he had to "wipe off" the tickle each time, but he kept asking for more. astounded.

last week the boys had their regular dental check up. dental cleanings are hard for harrison but he's always handled it well. my hunch is that he does so well because his body goes into "freeze" mode rather than into "fight" or "flight". the same thing happens during haircuts. the stylists always (always!) comment on how still he sits. little do they know it's because internally his body is freaking out. but...during his tooth polishing last week he actually raised his hand to ask the hygienist to stop (before the appointment i told both boys they were allowed to do that). she gave him a moment to breathe and then he was able to continue on. i was pleased and surprised he was able to express himself by raising his hand. but there was one bigger lesson that came from that dentist visit.

harrison has never been able to have tooth xrays taken. the've tried each time for the past two years. he gags. he can't handle holding the little bite piece in his mouth. last week he was finally able to get one good, non-blurry xray! but it took him four tries. he gagged, he didn't like it, but he kept trying. our sweet dentist, after the fourth try, said there was no need to continue and praised harrison for what he was able to do. 

graham has never had dental xrays taken. they would have taken some last time had he not had the vomiting disaster. but anyway. last week graham was able to hold still for two xrays. he did it perfectly on the first try. it was easy for him.

harrison was not happy about this. while leaving the dentist's office harrison said, "ugh! i'm so frustrated! it's not fair that graham only had to do two xrays and i had to do four!" i explained that "graham was able to hold really still so his xrays weren't blurry but you kept wiggling so your xrays were blurry so they kept taking more in hopes of getting a good picture." harrison replied, "i hate that thing and i keep touching it with my tongue!" i told him that's exactly why the pictures were blurry.

this lead to a good conversation about how every person has different strengths and different weaknesses...how graham's mouth is not as sensitive as harrison's...how god created all our bodies differently...how it's brave to persevere even when something is hard...how we can do hard things!

but that's not the point of this post. the point is this: do you know how awesome it is that harrison was able to 1) get frustrated 2) identify the emotion 3) verbalize why he was frustrated 4) deal with it appropriately 5) have a conversation about it 6) move on?

i walked away from that moment thinking wow! my son is frustrated because life isn't fair! that is just. so. NORMAL!

astounded. 

in november i am seeing lots of evidence that harrison's body has changed. i feel as though my sweet boy is back. but he's not quiet anymore.

i am so very, very blessed.

 

understanding feeding - the things we take for granted during those 3 squares a day

source

can you recall a time when you've eaten a saltine cracker?

think about it now.

concentrate on the sensations you experienced upon putting that salty crisp snack into your mouth.

 

how did it feel? how did it taste? how did it smell? how did it sound? 

more importantly, how did the cracker change as you chewed it?

if you answered "it went from crispy to soggy" you are correct. 

but that's just the easy answer. 

want to know the complex explanation behind that easy answer?

with every single chew...the cracker LOOKS different

with every single chew...the cracker FEELS different inside the mouth

with every single chew...the cracker SOUNDS different

with every single chew...the cracker TASTES different 

(the enzymes within our mouths that begin to break down food detect differences in taste with each chew)

with every single chew...the cracker SMELLS different 

(the odor receptors in the back of our mouths/throat detect differences in smell with each chew)

with every single chew...there are changes in head position (vestibular sense)

with every single chew...the jaw joint changes the amount of pressure to use (proprioceptive sense)

with every single chew...the body adjusts the amount of glucose it produces, and focuses on satiation peptides and stretch receptors in order to decide how much more to eat (interoceptive sense)

all this is happening within our beautiful, intricate, amazingly elaborate bodies with  

EVERY.

SINGLE. 

CHEW.

and that's just in a typical body.

now take a child who's body is over responsive to sensory input.

his system does not easily process all this detailed information.

with EVERY SINGLE CHEW his body is working over-time.

eating is a chore. 

it's a chore he struggles with. 

it's a chore he is not able to do successfully.

it's a chore that results in failure.

how would you feel if you failed at something at least three times a day?

i'd feel defeated.

i'd give up.

i'd avoid it. 

we take eating for granted. we think it's easy. we get out a package of saltine crackers, open it, and before we know it the entire sleeve has been gobbled up. 

the truth is eating is the complete opposite of easy. 

it "is the MOST complex physical task human beings engage in. it is the ONLY human task which requires every one of your organ systems, and requires that all those systems work correctly. in addition, EVERY muscle in the body is involved (one swallow for example, takes 26 muscles and 6 cranial nerves to coordinate). plus, eating is the ONLY task children do which requires simultaneous coordination of all 8 of our sensory systems." (dr. kay toomey)

feeding ourselves is hard work. 

if you and your family are successful eaters, if you have one of those exceptional children who will eat anything, if you have a sweet kiddo who will eat most things, if you have never known a difficult battle-filled mealtime, please stop right now and thank the lord.

for those of us who do, or have a kiddo who does, struggle with feeding there is help and hope!

this is the next step in our journey, friends.

on tuesday harrison and i went back to STAR center for a feeding evaluation. it went better than expected, for which i am thankful. once again, i was so very proud of my brave boy as he was receptive to becoming a "food scientist" under the direction of dr. kay toomey, which resulted in him taking miniscule tastes of foods he usually cannot even look at. we will soon be starting feeding therapy. our whole family will be involved, will learn, will adjust, will go through it together.

thank you to feeding expert dr. toomey of sos feeding solutions for providing the saltine cracker illustration. when i asked her, "how do i explain this to our family? how do i tell them harrison's not just a picky eater?" she eloquently outlined for me how our bodies react to eating. she clearly explained how harrison's body OVER reacts to feeding...how he (we) will have to work very hard to learn how to eat.

no more avoidance. no more giving up. no more defeat. 

it's time for harrison to find success!

 

 

 

 

one year later

at this time last year i was preparing the house for company. i cleaned the guest bathroom, put fresh sheets on the bed, set out towels and made sure the rest of the house was presentable. our friend rachel ottley was flying in for the weekend to observe harrison, evaluate his issues and discuss the results of her findings with us. she did all that and also spent time drying tears, encouraging our parenting skills and teaching us how to play with both our boys in a therapeutic way.

this weekend marks the one year anniversary of...well, i like to think of it as a race. one year ago on september 14th (the day rach told me about my son) the starting gun shot off and we began a slow and steady marathon. we have discovered so much, for which i am immensely grateful, and i cannot imagine what our lives would be like had we not ventured down this path.

the gains harrison has made are so many. we've gone from noticing a problem to evaluating a problem to treating a problem to seeing improvements to graduating from treatment to noticing new problems.

we have come a long way but this marathon we're running does not have a defined finish line.

this will be a life-long, never-ending journey.

just this morning i met with harrison's teacher, principal, the school's child psychologist, and juliana our occupational therapist, to discuss modifying harrison's school day. he's been complaining that full day school is "tiring", "too much", "hard work" and that he "wants a day off" or "only wants to go for a half day." upon hearing those first complaints my concerned mommy instinct kicked into overdrive: he's actually telling me how he feels! i need to do something about this. i need to honor him and is willingness to express himself! i need to help make his days better.

during the meeting harrison's teacher and the child psychologist made it clear that they would never have known there was anything remotely different about harrison. he participates well in class, listens well, behaves himself well, interacts with others well. all in all, he is a great kiddo and a great student. my response to their comments was this: thank you! i'm so very happy to hear it. but i need you to know that all stuff harrison does well doesn't come easily. his body is working so hard to maintain that level of function!

it's been one year of hard, hard, HARD work!


it's been one year and harrison can now keep himself regulated for a full day of school. it's tiring. but he can do it.


it's been one year and harrison can now identify his feelings and express them. not all the time. but sometimes. and sometimes is more than never.

it's been one year and harrison can now interject comments and carry on conversations. it's easier if the chit-chat is about a subject he loves. but factual conversation is better than none.

it's been one year and harrison can now tell us his likes and dislikes. it might be hard to hear. but we value every bit of insight.

it's been one year and harrison can now watch movies without a breakdown. not every movie. but we've had family movie night a few times and that's a BIG win.

it's been one year and harrison can now talk about his day. it is sheer joy to listen to him spill over about his life as opposed to pulling information out of him and still ending up with nothing.

it's been one year and harrison can now say things like "mommy, wouldn't it be so amazing to walk on a rainbow?" he said that earlier this week. it's the very first abstract/imagining statement i have ever heard him say.

it's been one year and i can now read harrison's body. i still have questions and wonder where in the world that behavior came from. but i know him so well.

it's been one year and i can now advocate for my son in an honorable, respectful yet fierce way.

it's been one year and i can now help him create strategies for dealing with every day things that might bother him.

it's been one year and i can now talk to him about his body and his brain and how they are so beautiful and so unique and how it makes me so happy that god made him just.like.this. and i am so lucky i get to be his mommy.

it's been one year.
it's been one very long exhausting year.
it's been one damn good year.

i'm too emotional to come up with a title

i have been mildly obsessed with the british royal family since i was a young girl. watching a real life prince marry a real life lady, which then turned her into a real life princess was beyond fascinating. it was dreamy. i remember watching diana walk down the aisle to meet her groom. the train of her dress and veil went on for days. i recall wondering if it was difficult for her to walk. i loved william and kate's wedding even more. jeremy makes fun of me for it, of course, but i'm not embarrassed. i think the royal family brings out the life-sometimes-really-is-a-fairytale side of me.

i've been loving the royal baby news coverage. i was happy they had a boy. not for any particular reason except you know how i love boys. i'm hedging my bets that they'll use the name spencer somewhere amongst the four or more names the new prince will be given as that was princess diana's maiden name. and wouldn't that just be an awesome way to honor her?

but even though their baby is a prince and the whole world is watching, they are still going through the same experience all us commoners have been through. they are brand new parents to a brand new child. they went into the hospital without a baby and came out of the hospital with one.

still to this very day i remember the strange feelings i had about how jeremy and i walked into the hospital as a couple and then they let us leave the hospital a few days later as a family. WITH A BABY.

into the hospital. no baby. out of the hospital. baby.

into the hospital. just people. out of the hospital. parents.

doesn't this strike anyone else as down right crazy?!

what's funny is the purple folder the hospital gave us. it contained tidbits like "your baby's poop should look like this..." and "your baby should be eating like this..." and "your baby should be sleeping like this...". i read through that violet-hued file repeatedly but it didn't come close to answering all my questions. still, the sentiment was here's your baby, here's your folder, go forth and prosper.

i cried as i sat in the wheelchair, holding a snugly buckled harrison in his car seat on my lap, while being pushed toward the hospital's exit. a giant bag of mixed emotions had positioned itself right on top of my chest. although i was asked repeatedly i could not completely identify what it was i was feeling.

jeremy brought the car around. the nurse listened for the locking sound as jeremy placed harrison's carrier into it's base. then she gave us the okay to leave. jeremy, harrison, me and our trusty information packet were safely loaded into the car. we pulled out of the valet area and turned right onto the street. in that moment our lives changed. and it does not matter what color the folder is or how much helpful insight it contains, nothing can prepare you for the moment your life changes.

today is harrison's final therapy session at STAR center. today i feel very much like that day so many years ago when they said it's time to check out of hospital and take your baby home.

i am scared.

it is scary leaving a place that has your best interests, and more so, the best interests of your baby at heart. it is scary leaving a place that is so knowledgeable and comforting and friendly and reassuring. it is scary leaving a place that you've relied on. it is very scary moving on into a new world of learning to rely on yourself.

it's hard to leave such a safe place.
 
yes, it's exciting. it's happy. it's a time to celebrate. but, for many reasons, my emotions are raw and ready. the tears come very quickly and i've been hard pressed to figure out why. i have been able to pin point some of the reasons - the fear factor, as mentioned above. but i think it's more than that. i think my tears come from an incredibly grateful heart. i am so very thankful for juliana, specifically, but for all the staff at STAR center who have walked beside us over the past eight months.

how do you say thank you to someone who does double fist pumps in the air because your son asserted himself and interjected a comment during an interaction with a peer? how do you say thank you to someone who gets even more excited than you do when she hears that your son initiated a conversation with another little boy while at the chickfila play area? how do you say thank you to someone who gives great suggestions about ways to get your son to wipe his own tooshie and then thinks it's absolutely amazing when he does just that? how do you say thank you to someone who is willing to step into a marriage and a family to help mediate some stressful things? how do you say thank you to someone who loves your child as much as you do and whose whole life is dedicated to helping him? how do you say thank you to someone for teaching you how to be a better parent to your son?

how do you say thank you to someone whose goal is to teach you the tools so that you won't need her anymore?

it really is the ultimate act of selflessness.

it is an unforgettable kindness.

it is a precious gift.

and it's hard to say goodbye to someone who has done so much for us.

as juliana brought to my attention, some of the emotion also probably comes from feeling so very accepted at STAR center. just like being in the hospital with a newborn, everyone is there to help you and no one there judges you. i don't have to explain anything to anyone. i do not need to be concerned about what harrison will do, how he will react, what he will say, what he won't say...whatever happens there is okay. the people there "get" it. they understand him. and they understand me. and they understand ALL THE THINGS that go along with him and me and us.

and it's hard to say goodbye to a place where you feel so understood.

one of the things i learned during my counseling session at the beginning of our time at STAR center was that it really is healing to write out my feelings. it's also healing to talk about them. apparently, every time i talk about or write about an emotional experience my brain literally shifts a little piece of that memory/data/whatever-the-heck-that-information-up-there-in-my-brain-is-called from my amygdala to my hippocampus. each time a bit of memory moves, a bit of raw emotion moves along with it. so over time i'll be able to talk about this subject (leaving STAR center) just as easily as i can now talk about what it was like to leave the hospital with my first born son. 

but until then, one thing i know...actually two...okay, three...

1) royal or not, every baby is a prince or princess.
2) each new adventure our children bring into our lives will carry with it a mixed bag of emotions.
3) this is what turns our ordinary lives into grand and interesting fairytales.


i love you all. thank you for listening (aka reading).

a guessing game - winner!

the correct answer to my last post was B: the sound the legos make while he's searching for a piece is too loud.

my sensory over-responsive child is deeply bothered by the loud-to-him noise his legos make when he's digging through them or dumping them out to find a certain piece. it is very interesting to me how something so simple - something i wouldn't ever have noticed - can be so disruptive to him. i love how harrison makes me think about things in an entirely new way.

i hope this little contest helped you understand how an everyday activity can be different/difficult for a sensory kid.

although 147 people read my post only eight were brave enough to comment. out of those eight, two people guessed correctly. good guessing, ladies!

we chose a winner in an incredibly sophisticated way...

congratulations to...

washington girls, consider yourself ten dollars richer! :-)


a special shout out to hannah ottley who has a deep understanding of how harrison's mind works. she knew instantly that the correct answer was B and was the first person to respond, albeit on facebook, so i didn't include her in the drawing. but i'm sending you a little special something in the mail, hannah! i'm so happy to know you and so thankful for how smart you are and for how you "get" harrison! you and your whole family are a treasure!

a guessing game

 *update: this contest is now closed. i'll announce the winner in a separate post.


i thought it might be fun to host a little contest.

look at the following photos...

now answer this question...

why does my son prefer to wear headphones while he plays with his legos?

a: he's trying to drown out the sounds of his annoying younger brother
b: the sound the legos make while he's searching for a piece is too loud
c: he thinks they make him look cool
d: listening to music helps him concentrate
e: listening to music helps him relax
f: his ears get cold easily


 

if you would like to participate in the guessing game, leave a comment with your answer.

i will mail a crisp ten dollar* bill to the person who answers the question correctly. if many people get the answer right, i'll draw a random winner from the pool of correct responses. this contest is open to anyone so feel free to pass it along to your friends. comments will stay open until thursday night, july 4th. i'll announce a winner on july 5th.


*$10 isn't much, but it'll buy an ice cream cone! and, really, what's better than an ice cream cone?!

the dice game

can i please share our new favorite activity with you?

we've grown a bit tired of extreme candyland which was played repeatedly during the winter months. time to come up with something new. 

i got this idea after harrison described a game he played in p.e. class at school. he explained that the gym teacher had a huge yellow die. the kids took turns rolling the die and looking at a chart that showed them which exercise they had to do. easy peasy right?

we have dice.

we can come up with exercise ideas.

so that's what we've done.

the boys and i make a plan. we decide what exercises we want to do and write them down. graham likes to come up with crazy ideas. anyone heard of a one-legged donkey kick? nope? me neither.

here are a couple plans we've used in the past few days. we list out six activities, one for each number on the die. we take turns rolling one die to find out which activity to do then we roll both dice to tell us how many times we get to do it.

this is GREAT counting practice for graham!!!! an added bonus on top of the great sensory input/exercise all of us receive.

a few days after we had started playing the dice game you won't believe what came in the mail...

 the may 2013 issue of family fun magazine.

which had a little blurb that showed how to make your own exercise dice!

so that's what we've done.

i happened to have a perfectly square box in the recycle bin which i covered with a brown paper grocery bag. i asked the boys what their very favorite exercises are and we wrote them on here. you know graham chose one-legged donkey kicks. :)

we do each activity 10 times.

i figure this big box die will be great to take outside!

the small dice can be put in my purse, a backpack or a suitcase so we can take them on trips...or even if we have to wait to be seated at a restaurant...or if we go to a friend's house that doesn't have things for young children to play with...or any place where two little misters might need to get some sillies out.

and that is just about everywhere!! 

occupational therapy results - the changes we are noticing

this is a photo of our fridge. a couple of items on this fridge are telling signs that occupational therapy is helping harrison. 

 ------

see this note? harrison went on a school field trip to denver's museum of nature and science yesterday. he had to take a 100% disposable sack lunch along with him. i wrote him a little note and tucked it next to a couple vanilla sandwich cookies. after i picked him up he pulled the note out of his pocket. i was shocked he kept it! he read it out loud to me and told me how he showed it to his teacher and read it to her. this mommy's heart was overflowing. but then...as i was making dinner last night i turned to open the fridge and saw that he hung it front and center, just below a red heart valentine he made for me a while back. i was shocked he kept it AND he displayed it!

this has been one of the biggest changes we've noticed in our son: his ability to give and receive affection. 

he gives more hugs. he gives more kisses. he is better at receiving hugs and kisses. he cuddles up on our laps more. he is better about using his words to tell us when he doesn't want to be touched. he is better about using his words to tell us when he does. he is better about using words to tell us HOW to touch him (firm pressure, but not too tight).

these are all great steps in the right direction. 

 ------

this photo shows a paper juliana sent home with us. she uses this scale at STAR center and thought it would be beneficial for harrison to have one at home. we use it to rate activities, 0-10. you can see the facial expressions associated with each number. this helps harrison:

 1) recognize emotions

2) identify what the emotion is - happy? sad? angry? 

3) associate the events in our day with a number on the scale and be able to discuss them

4) most importantly, and this is really hard for him, understand that if something bad happens while doing something fun (you fall down while playing baseball) it does not mean that the entire event was bad. sure, it really hurts to scrape your knee (rating = 0 or 1), but you can recover and get back outside and have fun again (rating = 10)!

this has been huge in helping harrison learn to regulate again after becoming dysregulated. 

it's also been huge in helping him talk about emotional things.

just the fact that he is comfortable using this scale is a great step in the right direction!

------

other changes we've noticed in harrison, in no particular order: 

i frequently hear "hey mommy, guess what..." or "mommy, i forgot to tell you something..." or "guess what we did today..." followed by actual back and forth communication with my son!

he actually wants to pick up the phone and call people, mostly memeandpapa.

our friends came by yesterday and harrison actually stopped what he was doing outside, came inside, started up a conversation by saying "i went to the museum today".

when discussing things he'll say, "i have an idea.." and proceed to tell me his plan.

in general, there are many more circles of communication now as opposed to me PULLING information out of him and only getting one word responses.

he has been writing about his feelings. just recognizing what he feels is a big deal. being able to write about it (even if he can't quite verbalize it yet) is an even bigger deal.

in general, he interacts so much more with us and others!

now, it has to be said that he still interacts with others in a socially awkward way. part of this may be his age - silly boy humor is at an all time high at the moment. but in my heart i know part of it is that he's just a bit socially awkward. sweet boy. 

i've also noticed that he does not crash into me when i pick him up from school anymore. at least he hasn't for a couple weeks. i guess we'll see if that behavior starts up again. 

------

there are still a number of behaviors that we do deal with:

i mentioned the social awkwardness.

he still needs to chew on his 'chewies'. 

during his birthday dinner he said something funny and every laughed. he got instantly upset/angry, turned around and held his fists to my face as if he was going to hit me. i tried to calm him and he was fairly quickly able to go back to opening presents. later i was able to discuss it with him. he said just got so surprised when we laughed. so it's clear that unexpected things - especially if they are loud and especially if he doesn't understand why they are happening (he had no idea why we were laughing) - are dysregulating to him. the other piece of this scenario goes back to him understanding the social connection that humor = laughter. he just doesn't get it. he still doesn't really understand humor, or what's considered funny, all that well. 

there are more but i need to jet outta here and go pick up my sweet boy from school. and, really, i'd rather boast about the positive changes we see than dwell on the little things that still need improvement. 

all in all, we are thrilled to see evidence that therapy is working!