SPD Blog Carnival for Summer!

One of our summer goals with Jennica was to make sure that she had plenty of opportunities to experience "chaos" among other children.  She gained a lot of ground in the last school year in her ability to function in busy/noisy environments.  Now that we've made a little progress in this area, we sure didn't want her to "forget" over the summer.  Since our older daughter was playing soccer, it made good sense to sign Jennica up as well!  If you read my post from a few weeks back, you'll see that the first few practices did NOT go well.  But we stuck with it!  :)  We've got four more games to complete the season!   Way to go, Jennica!

Go Jen!  Headed upfield dribbling the ball! 

Jennica dissolving into "twisting" during a game.  (Look for my blog post soon regarding her endless hair-twisting issues!)

Jennica with our other beautiful daughter, Tiersten.  Note the baggie of GFCF pretzels in Jen's hand?  We keep crunchy snacks on the sidelines for her for chewing stimulation during game breaks.  :)

Jen's dark head, smack dab in the middle of a pile of obnoxious boys.  They were supposed to be waiting "quietly" on the sidelines while they waited for their turn on the field.  Instead, they thought wrestling was a better way to pass the time.

Another WINNER!

My oldest (very, very old) sister found this article in her Spokane newspaper!  As an SPD Mom that is always look for great information to share about SPD, and usually finding it very hard to come by, I'm THRILLED to give this article a resounding "thumbs up"!! 

Nice to see good information about SPD getting out!  I'm SO encouraged!!  Please follow the link!
http://www.spokesman.com/stories/2010/jul/27/sensory-confusion/

Book Review!!!

I'm a little late to the party........but I finally got around to ordering Hartley Steiner's new book, "This is Gabriel Making Sense of School."  It arrived today from Amazon, and I hurriedly ripped open the box on the way to the girls' soccer game and ran out the door with it, thinking I would read it at the game.

Well.......I arrived at the game with it in hand, and my Mom and sister both read through it.  My sister is a special education teacher in Minnesota, and is here visiting for a couple of weeks.  Both my Mom and my sister were instantly impressed with both the simplicity and the depth of the information provided.  (Any of us that have ever attempted to explain SPD to anyone can relate to the difficulty of making the explanation simple, without being too deep--all at the same time.)

Soccer games are always more chaotic than I tell myself that they will be/should be.  So....I left the soccer game with the book still unread, and actually sat on the book for most of the game, as Jennica spotted the brightly-illustrated cover on one of her many passes by my seat, and demanded to read it immediately, rather than go back into the game.  So the book became my temporary seat cushion as I "hid it" from her to keep her from this distraction.  :)

And then home again.  And then dinner.  And finally bedtime, and out came the book.  So my first real read was with my 6-year-old SPD daughter planted firmly on my lap. 

First, I want to say that I enjoyed this book!  The information IS deep enough, and yet simplistic at the same time!!  The illustrations are bright and engaging!  I fully intend to share this book with our principal, our schoolteacher, our paraeducator, our occupational therapist, and virtually everyone else that I can convince to read it! 

My own positive review aside, my daughter recognized herself in this book!  Over and over and over!!!  She kept saying, "Just like me!" as I read to her about Gabriel.  What a wonderful gift to be able to read this book to her and let her feel like, even for a moment, she is not so alone and that there is another child out there like her!!!

A huge "Thank You!" to Hartley for a job well done!  (You go, Girl!  I look forward to seeing you again in Seattle in November!)

Buy it here:  http://www.amazon.com/This-Gabriel-Making-Sense-School/dp/1426927770/ref=sr_1_1?ie=UTF8&s=books&qid=1280290234&sr=1-1#_

Not Horsin' Around

Oh my.....what a week!  I wish I was expressing that in exhaustion from too much fun.  Instead, I've been soundly humbled by a sick horse. 

Yodi has been ever-so-slowly declining in outward signs of health for about the last 60 days.  I've been watching it happen, and waiting for it to turn around on its own or reach a point where I felt the need to do something.  But.....its been subtle.  His coat is dry and his skin is flaky.  I justified it by the very wet, moist Spring and Early Summer that we've had.......which followed a miserably wet Winter.  Was he losing a little weight through the topline?  One day I would think so.......the next day not so much.

Well......about 10 days ago, he was suddenly swelling in certain areas and seemed less "perky".  We immediately stepped up to the plate and started watching him more closely, but last Friday, the vet came out for a visit.  He tranquilized him for a tricky procedure, and I was really hoping for a simple infection to step out and say, "Hi!"  No such luck.  No infection.  And no sounds of lung congestion despite a dry cough with no nasal discharge.  And no fever.  So we sat back and observed for a few more days.

By this past Monday, he was showing signs of severe dehydration with soreness still acute in his spine.  Four horse-savvy adults attempted to pull blood out of him for testing before we figured out that our vacu-tainers were defective.  (Twenty+ needle holes later!  Geez......I love this horse.  He stood like a charm and would have happily drawn his own blood if he could hold the needles in his hooves.  We all decided that when the next set of riding students are ready to learn to give vaccines, THIS will be the horse we will use because he never raised a fuss.)  We finally got blood out of him using a syringe, I ran it to the vet courier, and it returned 24 hours later with signs of a depressed liver enzyme, and no other significant offages.

My vet was totally confused with the liver enzyme.  There aren't a lot of things that cause this number to go too low, and none of them fit Yodi's symptoms or life.  So.....I personally spoke with a Veterinarian at WSU's Diagnostic Labs and he graciously offered to review the results.  I faxed them over to Pullman, and am still waiting to hear an opinion or suggestion from them. 

Fortunately, while waiting for a determination of the next step, Yodi's swelling, all-over body soreness, and dehydration have resolved.  He's still coughing, but I'm watering his hay for the time being to lower the irritation of inhaled dust.  His spine is still sore, but a bit better after a full week of rest and spoiling.  I've stepped up the insect repellants, and altered his feed slightly to add electrolytes. 

Once I hear from WSU, I'll know what step comes next.  For the time being, I'm hoping that we're past the worst?  Not quite sure what caused any of this, and we still have his coat and skin condition to address.  But its been a LONG WEEK! 

The boys of summer

The boys are home from football camp!  They are sunburned and tired and hungry.......but had a GREAT time!  Our school has not attended a football camp in many many years, and this year was a definite success.  They even came home with a TROPHY!!! 

Please laugh at the photo of their legs!!  I am!!!  Grant is the one on the left with the "socks."  Dane isn't much better, but was smart enough to at least wear lower socks. 

Mike came home late last night, and the rest of the team returned this morning.  I have to say that its rather amusing to compare the same stories from the adult/coach perspective vs. the teenage boy perspective.  :)

Its nice to have them home! 

The fight for dexterity

I've attended enough SPD educational offerings, read enough SPD blogs and texts, and spent enough time with occupational therapists that specialize in the SPD field to know that handwriting is a very common challenge for kiddos with these issues.  The reasons for handwriting challenges are about as diverse as the kiddos themselves.......and the answers and solutions are just as diverse. 

Jennica is no exception to the handwriting issue.  We've seen it coming but, in all honesty, lots of 6-year-old neuro-typical children also have handwriting issues.  So.......its hard to get anyone real excited about it.  The schoolteachers sort of shrug and say, "She's within normal age range on this skill."  Yeah.......but for how long? 

So handwriting is the #1 issue that I have requested help from our OT for the summer.  I'm probably a little ahead of the game, but Jennica has to get this a little bit resolved in the next year.  (I happen to be a rabid opponent to teaching keyboarding for first grade for anyone that is physically capable of mastering the basic tasks involved.  Reality tells me that, regardless of a child's future path, they HAVE to be able to write to some degree to function normally in life.)  I'm not foolish enough at this point to say, "Fix her.  You've got 10 sessions."  Instead, I walked in the door today and said, "Teach me about handwriting and what it truly takes for the hand to write correctly."  Bless her heart, our OT opened her door of knowledge and shared a little with me.  I am volumes ahead of where I was this morning.......and its all bursting out of my brain in fits and starts tonight.

First of all, she showed me that Jennica has a fairly weak use of her opposable thumb.  Interesting......and after having being shown what she was talking about, I feel like I should have noticed it before!!!  She assured me that without the skills that we have been building in the past year already, it wouldn't have really mattered if I noticed it before or not......Jen wasn't ready to focus on this issue until now.  (Whew!  No guilt then for missing the signs on this one!) 

So......we have to focus on strengthening "grasp."  And not just "pencil grip" in the traditional sense.  But actually training the fingers how to work in sync with the thumb.  I wasn't sold on it, until I literally watched my daughter today move her thumb (with prompting) to a new position and her fingers immediately lost their ability to function!  Her fingers no longer knew what to do when her thumb went to a new position!!  Fascinating!!

I have a lot to learn so that I can help guide Jen's daily life to include more use of her thumb.  Picking up toys off the floor.........swinging on the monkey bars at the playground........holding the chains on the swings.......Everything will now have to include a quiet "prompt" to make sure that her thumb is in the opposable position.  She's going to struggle with coordination at first, but I can see the progress coming quickly with this one.  Of course, that might be the optimist speaking.  :)

And meet my new friend!  Jen will have to give her a name.  But each day, Jen will be responsible for "feeding" our friend beads, cotton balls, and anything else that we can think to feed her.  The goal?  Squeeze to open her mouth. 

I LOVE occupational therapists!  They are the coolest, most innovative people on earth!  Thank you, Renae, for sharing your knowledge with me! 

No Boys Allowed!

Mike and the boys are headed to football camp for a few days.  Which means that........the girls are home alone!!  Wahoo!! 

Now......its not like it going to be a party with me and a 7-year-old and a 6-year-old.  But then again.......the girls are home alone!!  Wahoo!!

Less laundry.......less dirty dishes.....no ESPN on TV......and popcorn and ice cream for dinner!  Its a PARTY!! 

Why do we see? And how?

I'm not a mechanical sort of person by nature.  I don't really care how things work, or why, as long as they do work when I turn the key, step on the gas, or whatever.  But when it comes to the human body, I'm constantly fascinated.  The more I learn about sensory processing through Jennica's challenges, the more fascinated I become. 

Our recent vacation through wide open countryside with panoramic views really brought home my fascination with eyesight.  I mean....seriously......how do our eyes WORK???

Jennica is very, very good at picture-find games.  You know the ones....I Spy books, Where's Waldo?, that sort of thing.  She sees detail very, very well and can pick specific objects out of a larger array of pictures that are similar in shape, size, color, you-name-it.  But she also has an overwhelming visual processing issue with "busy" fields of sight.  Primarily, if lots of things are moving all at the same time, especially if there is a lot of accompanying noise, she retreats!  (Think school assemblies, PE class, and soccer!!) 

Tiersten, on the other hand, is very naturally athletic and is not disturbed in the least with dribbling a soccer ball through a running herd of players.  (Jen can dribble just as well in a one-on-one environment across the yard.  But if other kids are moving and running?  Forget it!)  But Tiersten can't see a group of deer on a distant hillside to save her life!  She couldn't spot the outline of the Jolly Green Giant laid out across a hillside in Dayton!  (Neither could I at Age 5!  Still a sore subject!!!) 

So..........sometimes I stop and ask myself..........is Jen's Sensory Processing really a disorder?  Or just an individual difference in personal strengths, weaknesses, and talents? 

In my humble opinion, I think over time it will become just a difference.  I see her making huge strides to adapting the way she processes to function in the neuro-typical world.   As long as her sensory processing restricts her from being able to participate fully in "typical" environments, her SPD is a disorder.  But I also think its good for her to be able to count the deer aloud in the car, while Tiersten is still struggling to even find them on the hillside.  :)  Its fun to watch her be victorious! 

Home again, Home again, Jiggety-Jig!

We left the confines of rainy Western Washington for 5 days over the weekend and spent it in Mike's homeland--the remote NE corner of Oregon, Idaho, and SE Washington.  I could have skipped the portion that involved a very treacherous dirt road in Hell's Canyon (made this country girl feel like a city girl), but otherwise...it was a good weekend!  With the boys now in their teens, we are feeling a sense of the ticking clock on the time that we have left for vacations with all four kids.  *Sniff* *sniff*

If you aren't familiar with the Pacific Northwest, our vacation destination was vastly different from rainy Western Washington.  The lifestyle.....the weather......the wildlife.....the topography......everything.  While we certainly don't live in a metropolitan area, the boys would be quick to point out that its more metro than NE Oregon!  (Think cattle guards on the road leading into the K-12 school campus.  And yes....K-12 all in ONE building.) 

But it was great to get away!  We saw some beautiful scenery in the Wallowa Mountains, and had a great time visiting with some of Mike's family on the way home.  We even did a drive-by on my crazy uncle's house in Dayton, but darn, he wasn't home.  (I'm safe referring him to as my crazy uncle here.  He thinks computers are evil and will never hear about this.  And besides.....the description is accurate.) 

Aside from Disneyland, this was probably the best vacation we've ever had with Jennica.  We didn't provide a lot of accomodations for her sensory system, other than "her" food, and she did okay!  We had a few whiny episodes, but I never once fought the temptation to duct tape her to the nearest flag pole!  :) 

I'm attaching a few photos from our trip.  The family shot was taken by a gracious motorcycle dude in Hell's Canyon.  The scenery shot is of the Wallowa Mountains.  And the barn......well......I'm an appraiser after all.  I thought the octagonal design was just cool!  :)

 

Berry obsessed

Jen lives for fresh fruit.  And broccoli.  Seriously. 

The average adult tends to react with narrow-minded sympathy when they hear of her food allergies.  If I were not traveling this path, I suppose I might react the same way, but I am much more aware these days of exactly how many foods are available in the world that don't contain any form of gluten, dairy, eggs, or peanuts.

And for Jen.....she's not suffering.  She has recently developed a general dislike for red meat, unless it is hidden in spaghetti or some sort of taco-type dish.  But other than the red meat issue, to which we're still adjusting, she has a wide range of foods that she loves.  And she has cravings just like any other kid.  However, her cravings might sound funny at first.  Coconut milk ice cream.  Broccoli.  Broccoli.  Broccoli. 

But this summer I'm giving Jen some stiff competition on strawberries.  I bought some a few weeks ago, and they were so good.  I keep buying them.  And eating them.  Usually it is Jennica that can't keep her paws off the strawberries.  This year, its me!  I really didn't even like strawberries in the past!!  I'm usually more of a chocolate sort of girl! 

So.....think of me this weekend.  I intend to spend my 4th of July weekend consuming as many strawberries as possible! 

Have a happy & safe 4th!

The view up here

Somewhere during our journey through the last 18 months, I developed a mental picture viewing my role as a special needs parent from the perspective of a mountain-climbing experience.  In this mental picture, our entire family is working as a team to scale this monolithic rock face, and each family member has a role in the process.  We all take turns being the motivator, the weak link, and the worker-bee.  We gather tools along the way, and we are constantly pushing Jennica ahead of us. Or, let's be honest, some days we're dragging her kicking and screaming behind us. 

Some days/months, we seem to make a lot of progress on our ascent.  Other days/months, we all seem to be tied together and scrambling desperately for a foothold.  But overall, we're always headed in a generally upward direction.  My vision of what lies at the peak of the mountain changes a bit from day-to-day.  But it is always some version of an independent, functional Jennica in early adulthood and we're all gathered around her, smiling.   

Every once in a while, in this mental expedition, we all get to stop and take a long drink of water.  We sit down on a rock, share snacks, smile at each other, and enjoy the view for a little while. 

This past Monday, we all got a reason to take a break and enjoy the view.  Let me explain.

On Monday, Jennica visited her naturopath for the first time since last September.  For a long while, visits with the naturopath were frequent.  To say the least.  But as of last September, we had completed all the testing we were going to complete for awhile, we had a dietary plan in place and were following it, and we had a supplement plan in place.  It was time to just "walk the walk" for a while, from a nutritional standpoint.  Improvements from nutritional changes are not instantaneous, and it was time to just let it all work.  Well..you know how we all get the comments of, "My...how you've grown!" from the long-lost aunt?  But we don't see it as pronounced in a child that we see daily because we have witnessed the changes slowly?  Well.......I got the "long-last aunt, bug-eyed look" from our naturopath on Monday when she opened the door.  It was good great for my ego to have her look at Jennica in absolute shock.  And then she started bubbling over, "WOW!  She looks great!!!  She's grown!!  Her weight is up, too isn't it?"  And then more, "WOW!"  I admit that I felt like I was basking in the sunlight while she commented under her breath throughout the visit, "Look at that eye contact...." and "The shadows under her eyes are gone!" and more, "Wow!"  And through her eyes, I could see that Jennica does, in fact, look healthier.  She is also chattier, brighter, and much more focused.  We both agreed that it is time to re-run the amino acids test that provided devastating insight into my daughter's nutritional issues, and diagnosed Jennica last summer with malabsorption (on top of the SPD).  Its been almost exactly one year.  I'm a little nervous to see the results.  What if the improvements are all external and she is still internally malnourished?  But then again, we need to know.  It is what it is and if she is still facing deficiences, we need to set about correcting them.  So....until the results are in, I'm going to enjoy the moment of her obvious, external health.  We're going to pray and pray some more for internal improvements as well.

After visiting our naturopath on Monday, we went to our first private occupational therapy appointment since December.  At the suggestion of our OT, we had taken a 6-month break.  Jennica receives OT in our school district, and we were driving 3 hours round-trip to private OT.  So.....we took a break to let Jen really integrate into school full-time and let things just sort of "be" for awhile.  Our OT session this past Monday started on a flat, platform swing.  Jen has always loved to lie or sit on this swing, but this time, she hopped on it and rode it like a surfboard.  She was using a ton of upper body strength to pull the ropes, and was really sailing--something she has been resistant to do in the past.  From the flat swing, she moved to the trapeze bar where she initiated a ton of knees-to-chest type moves--more stuff that she has been prompted for in the past and responded to with marked resistance.  I could see the wheels turning in our OT's brain, and she quickly moved Jennica to a sequencing activity with Play-Doh.  And then they went to jumping with a counting association......back to the flat swing.......and at Jennica's request, more table activities.  The OT finally turned and mouthed a huge, "WOW!!!" at me.  We finally got a chance to talk freely at the end of the session, while Jennica pumped herself (Can you say motor planning?) wildly on another swing with huge pulling arm movements.  The OT raved about the level of improvement since December.  Jen's core strength, motor planning, and mental focus are SO much stronger.  She initiated a variety of conversations with the OT throughout the session, with great improvement in pragmatic language.  The OT asked me what direction we wanted to focus on with our sessions this summer, since the child that she was expecting to see (the "old" Jennica) is ready to tackle some more advanced obstacles!

Does Jennica still have SPD?  Absolutely!  Do we still have a long climb ahead of us?  Definitely!  But the enthusiasm and boost that we get from these positive signs of progress are huge.  So....I'm picturing us.....sitting on a rock in the sun, sharing a snack and some conversation, before we stand up and dust ourselves off and head for the heights above.  The view from here is great!

Those who relate and express it!

I initially sat down at the computer this morning, thinking that I would explain my great day yesterday.  However, before beginning to write my blog, I visited several other blogs that I've been following recently.  These are bloggers that are on similar parenthood journeys, and I greatly enjoy their humor and insights.  I happened to land on two blog posts that really spoke to me today.  So, instead of sharing my own "wisdom" today, I'm going to pass on their wisdom. 

First, visit Ray of Light at http://trydefyinggravity.wordpress.com/2010/06/29/ray-of-light/

And then, at Welcome to Normal, visit http://www.welcome-to-normal.com/2010/06/do-ask-do-tell-how-to-shift-autism-into.html

These two Moms get "Beth's Pulitzer Award" today! Thank you for touching my soul today!

Imaginations gone wild

I had an overwhelmingly good day today--the kind that is keeping tears of relief and hope hovering very near the surface.  I will blog about it in the next few days--I promise--but right now I'm still processing and savoring the moment.  :)

But at dinnertime tonight, I had a great time in a different way.  Mike was gone to a meeting this evening, and the boys were away, so it was just "me and the girls."  I heated a frozen pizza for Tiersten and I, made Jennica one of her allergen-free pizzas (which she LOVES), the girls drank milk (soy milk for Jen) out of champagne flutes (a new thing they like to do after Jennica found them on a very top shelf while....er.....walking on my kitchen counters last week), and we enjoyed some "girls-only" time. 

Somehow, we ended up on the topic of what they want to be when they grow up.  Tiersten reported she wants to be a veterinarian, a horse trainer, and a chef.  Jennica said she's going to be a lion tamer, a ballerina (interesting.....since she refused to take ballet lessons a year ago), and a chef.  And from there, the two of them just let their imaginations run!!  They decided that they are going to open a restaurant together and call it "Sisters".  Tiersten is going to cook the meal-type food, while Jennica is going to make only desserts.  Tiersten insisted that they will have a lot of gluten-free/dairy-free food, so that Jennica and "other kids like her" can eat there (This impressed me!  Thats pretty generous for a big sister that doesn't have any dietary restrictions and hasn't always been terribly thrilled about what Jen eats!  Very gracious of her!) 

I pretty much just sat there and let them plan!!  It is SO cool to hear them collaborating like this!  Tiersten is so strong-willed and....ummmm.......bossy that she doesn't always let Jen have much input.  And Jennica's SPD caused early challenges for her with imagination and conceptualizing.  Well, lemme tell ya.......They HAD IT tonight.  They've got their menu planned!!!  :)

I'm finding myself in uncharted territory.  I'm SO excited to hear this new level of "play" between my girls that I'm fighting an urge to go overboard.  I briefly considered making them a huge "restaurant sign" tonight after they went to bed......just to surprise them with tomorrow.  I want to encourage this type of play, but I also am aware that, for them, by morning they are likely going to be on to an entirely new adventure with their restaurant plans long forgotten.  Or not.  But either way, I need to butt out and let them be.  Sigh......  :)

Just fun to listen to.  "Sisters."  With some gluten-free/dairy-free food on the menu.  I think its got some serious potential.  Any investors?  :)

Random "boy stuff"

Being the youngest of three daughters, I am dumbstruck at times by the antics of my two sons.  Considering that they are now 15 and Almost-17, you would think that I would be used to them by now.  But nope.  They still have the ability to make me speechless.  Take these few examples from this week:

1) On Monday, I received two identical envelopes in the mail.  Addressed to the "Parents of......" so I naturally assumed that they were my boys' final grades for the school year.  Much to my surprise, they were instead form letters informing me that my sons' grades were being held.  Once their "fines" were paid, the school would release their report cards.  I also attended this school a bazillion years ago and had several of the same teachers.  I also paid their stupid book fines each spring, so I wasn't too worried about that part.  Several of our teachers delight in charging $1.00-$2.00 for the slightest dent/bump/whatever on a textbook.   If my children were responsible for defacing a textbook, or losing some piece of school property, there would be some ramifications.  But I didn't think that was the case.  But holding their report cards for ransom???  Seriously??  Today, I stopped by the school, paid their fines, and collected their report cards.  Dane actually owed money for Honor Society dues.  (Dues to belong to Honor Society?  So much for the honor.  That one is new since I was there, but whatever.)  They both ended up with 6 As and 1 A-.  I think I can live with a minor book fine with those grades.  I'm just glad that their grades reflect that they are USING their textbooks.  :)

2)  Despite the fact that we live in a rural area, we try pretty hard not to look like rednecks 'round here.  We don't have any broken household appliances in the front yard, all of our vehicles are fully operational....that sort of thing.  So when Mike brought home a tire this week, I frowned.  When he tied it to each boy and had them run around the front yard dragging it?  I about came unleashed!!!  And then he proceeded to "increase the weight" by having their little sisters sit on the tire while they ran around the yard dragging the tire!!!  Apparently, the point is to improve conditioning for football.  But isn't there somewhere they can do this where they won't be seen?  Or recognized?  Sheesh.

3) And lastly, my sons went water-skiing and wake-boarding today on their boat.  With no sign of the sun and only 64 degrees outside.  And then they griped about how cold it was.  Well.......duh.  They drove home in Dane's car with wet clothes and he has cloth seats.  Those still-wet seats are going to feel good tomorrow!  NOT!  Funny thing?  They bumped into my Dad on the river.  He was fishing......and they stopped to chat with Grandpa.  (At least he was smart enough to stay dry!)  Why would you go water-skiing in cold, overcast weather?  I don't have the answer.  So......how smart are you?  What was that GPA again? 

4) After a year of high school Spanish, Dane has started referring to me as "Madre".  The first time was funny.  The second time was still funny.  The 92nd time......let's just suffice it to say that its become annoying, which gives him even more reason to do it.  He going through a stage right now where annoying people is FUN.  And at almost 17, he's darn good at it!!  I try not to let him "get to me," but Madre?  Seriously?  Perhaps the best way to combat this would be to find an annoying-sounding name for "son" in another language.   Hmmmmmm......two can play this game.......Suggestions?

Boys!  :)

Glad to be sharing the journey

Almost from the moment we met, Mike and I were inseparable.  Almost ten years later, we're still that way.  We might be physically apart due to work or other normal commitments, but we generally talk several times each day and almost always know where the other one is and what they are doing.  We don't really have many friends that we do things with......as we do everything together.  Odd?  Maybe.  But its who we are.

Six years ago, Mike and I had never heard of Sensory Processing Disorder.  We had an infant baby girl that we named Jennica, which means "Gift from God."  (And she has been a gift in so many ways.)  And through her, we have come to experience SPD.  Not as a next-door neighbor.  Not as an Aunt and Uncle.  Not even as casual acquaintances.  But as parents. 

Our experience with our diagnosis and discovery of SPD is pretty typical to the journey of many parents.  A child that fussed more than usual, and was ever-so-slightly behind on certain milestones.  Never enough to really draw attention, but just enough behind to raise a few half-hearted red flags.  Looking back, the subtle signs were there.  But were they glaringly obvious?  Definitely not.  If we could go back knowing what we know now?  I'm still not sure that we would have reached a diagnosis sooner than age 4.  The signs, in our particular case, were just too subtle. 

In any case, I'm so grateful that we're walking this journey together.  When Jennica first visited Mary Bridge at 8 months of age, we went together.  When she was sedated for some early blood tests, we were there together.  We've both attended preschool, Day Care field trips, and we've sat together through IEP meetings.  It took some horrific scheduling, but we even attended the first 10 or so occupational therapy appointments together after she was diagnosed.  When she underwent extensive testing this last winter for seizures and sleep disorders, we did it all together.  (Still grateful that neither of us attempted to endure that 48-hour EEG alone!)  We attended the neurology appointments for results of the testing together.  We attended her eye therapy appointments together.  And even last night, as we sat and debated whether or not to continue soccer, we made the decision together.  (It went better the third night, by the way.  Thanks, in large part, to Mike's intervention.)

Mike and I bring very different skills and life experiences to the parenting table.  Neither of us is the "heavy", while the other is the "push-over."  We take turns on the discipline.  We take turns reading stories at bedtime.  We take turns shopping for gluten-free/casein-free/egg-free/peanut-free food.  And we take turns feeling frustrated, inspired, encouraged, and defeated. 

No matter what turn the roller coaster takes in a day, or how many turns it takes that day, I'm always grateful to be sharing this journey of parenthood.  Some days I'm uncertain of what the future holds, but I'm always always always certain that Mike was meant to be Jennica's Dad. 

I've got the "Second-Guessing Blues" today

At the risk of sounding like a broken record, let me mention again that Jennica has made large social strides in the last year.  With these strides has come great improvement in the ability to tolerate noisy environments, lots of movement around her, and chaos in general.  She has gone from being a wall-hugger in the school hallways, to zipping around with friends smack dab in the middle of the chaos.  And she's been happy and engaged in those environments.....not just present. 

Both of our girls passed on the opportunity to play T-ball this past spring.  Tiersten was worried that she might miss out on too many riding lessons with her horse, and the lots-of-waiting-for-your-turn environment of T-ball didn't strike a chord with us as being a great idea with Jennica.  And admittedly, having the two boys both absorbed in track and Grant's surgery scheduled for April didn't really make me inclined to "push" the girls to add another set of games/practices to our schedule on top of school.

But rec league soccer is played here during the summer.  It starts after school is out and is completed long before school starts again.  And soccer involves a lot of physical running outdoors.  We mentioned it to the girls in May, and both were excited with the idea.  So.....we signed them up.  We bought the cleats and the shinguards, and we have practiced with them at home.  Both girls can dribble the ball surprisingly well!   We started practice with their assigned team this past Monday.

After two practices, Tiersten is doing great.  No surprises there.  Jennica is doing......not so great.  And I'm stunned.  She got through about 30 minutes of the first practice before the whining and tears started.  The second practice was even worse.  None of these kids are accomplished soccer players and the coach keeps things light and fun.  But Jennica is falling apart. 

So...I admit that I'm frustrated.  She has done GREAT at home with our family playing in the yard.  She gets right to the ball and will even steal it from her big brothers.  This is an outdoor sport, so the noise of gymnasiums that typically bothers her isn't a factor.  I honestly thought that this would be a good opportunity for her to play and run and exercise.  Instead, it appears that its going to be an overwhelming failure for her.  I wish I had never signed her up. 

Tonight, we have our third practice and I think we'll try again.  My goal is to get 20 minutes of "engaged behavior" out of her at the beginning of practice and then she can do....whatever.  Sit on the sidelines or whatever.  She is already whining that she doesn't want to go at all.  So where did we go wrong?  Do we just let her "quit"?  This doesn't seem like something you force a kid to do.  And who is it really for?  I don't need her to play soccer, so why am I still trying?  When do you begin to talk to kids about "quitting"? 

Soccer schmoccer.  GGGGGRRRRRRR.

"Mom.....I don't like school."

Jennica told me tonight that she doesn't like doing "school" with me anymore.  I almost said, "Too bad!" which is what I was thinking.  But I rubbed her back and sounded sympathetic so she would go to sleep.  And tomorrow.........we'll do "school" again.  :)

You see......my daughter made TREMENDOUS social gains in kindergarten.  And really, she made pretty good academic progress, too.  But she's still academically behind.  So......she's attending "Mom's Summer School."  We only work about 15-30 minutes per day and my goals are reasonable!  And she's being heavily rewarded (or bribed, if you prefer).  But I'm specifically working on the areas that are difficult for her, which means she is resistant......and she's letting me know.

I will admit.......its exhausting.  If I push too hard, she quits altogether.  If I don't push hard enough, we won't make any progress.  I don't have any grand illusions that she's going to be a model 1st grader by September, but she needs to be more fluent with several skills or she's going to really struggle.  She might really struggle anyway, but I'm going to feel a whole lot better about it if I've genuinely tried over the summer.  Thankfully, she will move on to first grade with a 1:1 para that can provide her with sensory breaks as needed.  (I'm becoming even more aware how rare it is to have a child with only an SPD diagnosis receive the services that my daughter receives.  Thank you thank you thank you....)

The one area that Jen really needs work???  Oddly enough???  Testing!!!  Seriously!  When put into a 1:1 situation where she needs to tell someone what she knows, she turns into a little mouse, hunches her shoulders, and refuses to speak above a whisper.  This is an extroverted, outgoing kid!  A sensory-seeker.......a swing from the rafters type kid.  But not in test situations.  So anyone that doesn't know her well and observe her in a regular classroom setting ends up thinking she knows zilch.  Which is NOT the case.  So.......I'm trying to teach her to "test".......which basically amounts to being able to sit with a "stranger" across a table and point out ABCs and 123s on a piece of paper when asked.  She's fully capable.....but dragging it out of her is another issue!

And lastly......I'm compiling a list of "changes" for her IEP.  One of my "beefs"???  Our school district is standards-based grading, and her PE teacher gave her a well-below-standard grade for PE.  Part of me says........"Who cares?  Its PE!"  And another part of me is horrendously annoyed.  This is a child that can count to 17 while hopping on one foot (without ever putting the other foot down).  She can throw a ball.  She can run and dribble a soccer ball.  She has NO gross motor delays.  The reason she got a below-standards grade?  She can't function well in a noisy gymnasium with a busy group of kids!  She has auditory and visual issues that make that environment impossible!  But you know what?  She's there!  She is managing to stay in that environment and is learning to tolerate it!!  She needs to be recognized for that accomplishment, because its HUGE!!! 

Okay......enough of my ranting...........being a schoolteacher is hard work.  'Nuf said.

Unleashing "the beast"

I still remember sitting in absolute horror at some of our early occupational therapy appointments with my daughter.  She had been recently diagnosed with SPD, and we were in "sponge stage", where we were trying to learn as much as quickly as possible in order to help her.  (A totally normal and typical parental response to diagnosis.)

In any case, the absolute horror was generated from watching our therapist playing with her and having fun with her to an extreme that I had learned not to let her reach.  Let me explain......(and you SPD parents might relate).....Even though we hadn't had a specific diagnosis, we learned early in our daughter's life to keep things "toned down."  There were signs when she was getting too rambunctious and over-stimulated, and we learned to recognize (the incessant giggling out-of-control, the too-bright eyes, the high-pitched squeaky voice of excitement) signs that we would be paying the price for HOURS to come in trying to get her to settle back down.  So....we learned to not let her get that "high" in the first place. 

During occupational therapy, I sat on the sidelines watching my daughter on swings, or jumping on trampolines, or participating in other activities with an ear-to-ear grin and LAUGHING.   And while I wanted to enjoy the moment of watching my daughter enjoying life, I inwardly cringed knowing that I would likely have to pack her out of the session kicking and screaming, or that she would fight me with everything for most of the rest of the day. 

And this certainly happened.  A few times.  But for the most part, what I saw after therapy was an IMPROVEMENT in my daughter's behavior.  And I wanted to know WHY?  Why could this OT wind her up and bring her down?  I wanted this ability!!!  So I demanded, "Teach me how!!!"

What I learned shocked me at the time.  In an unintentional way, I had been contributing to my daughter's inability to calm herself.  By never allowing her to really get "wound up", I was keeping a tightly coiled spring....well.......coiled.  The OT was releasing the pressure with carefully-designed play routines, and then helping my daughter to regulate and bring herself back under control.  By repeating this over and over and over, my daughter was "boiling over" and then coming back to a "simmer".  And "boiling over" and coming back to a "simmer".  And she was learning to self-regulate in the process.

In most situations, Jennica now self-regulates very well!  I can let her run and yell and be rowdy without fear that she's going to be a raging lunatic for the rest of the day.  I know that when we leave the playground (with proper wind-down time), or whatever the setting may be, she's going to be able to adjust to heading to the grocery store, and that we're all going to be able enjoy the afternoon. 

For you parents out there that I know are still in the hardest part of your journey, find a great OT that can and will teach you how to relieve your child's inner pressure, and then regain control of their brains, bodies, and emotions!!!  You can do it!!!  You don't have to be the Mom (like I was) that watched with envy as other children left the playground, happily holding their parents' hand and willingly moving on to the rest of their day!  Life is waiting! 

"Go Fish!"

I overheard this conversation between my girls yesterday morning.  Tiersten is neuro-typical, age 7, very bossy, and the "cruise director" in our family.  Jennica has SPD, age 6, and has perfect "little-sister radar" on making her bossy older sister crazy.  (I understand "little-sister radar" very well.  I'm a youngest sister, too.  Mwah-ha-ha!)

Playing "Go Fish" with a regular deck of cards:

Tiersten: Do you have any Kings?  Those are the ones with the "Ks" on them.
Jennica:  Well........yeah.  But it has a heart on it and I like hearts.  So I'm not giving it to you.
Tiersten:  You HAVE to give it to me.  Thats how the game is played.
Jennica:  But I don't want to.  Oh......Fine then. (Throws the card at Tiersten.) Do you have any with Js on them?
Tiersten:  Nope.
Jennica:  Me neither!  HA HA! 
Tiersten:  JENNICA!!!!  That's not how you play!!!

End of game.  :)

And then there is the pickin'......

So.....over the weekend, I developed a "summer plan" of sorts for Jennica.  For the most part, it probably contains your average, typical goals of a child between kindergarten and first grade.  Cement the ABCs.....both recognition and phonic sounds.  Improve number recognition and patterning for math skills.  Strengthen handwriting skills.  Strengthen handwriting skills.  Strengthen handwriting skills.  You get the idea.....

And then there is the pickin'.  It ain't a pretty issue, but it also needs addressed.  I'm talking about perpetual wedgies.  Or skin irritations.  Or some other form of......something......that has my daughter digging constantly at her nether regions.  During toddlerhood, it is socially-acceptable.  In first grade, it is fodder just waiting for ridicule.  My daughter has enough issues to deal with already.  We don't need to add anything more. (Picture her at Age 30 lying on Ms. Psychologist's couch and talking about how she was permanently damaged by the classmates that teased her incessantly in first grade for constantly scratching her fanny.  UGH!  Let's not go there.......)

So this weekend, I bought some rather spendy version of organic, hypo-allergenic laundry detergent guaranteed to soothe the most sensitive skin.  I've ordered her some new undies, constructed of only the finest organic cotton.  Today, I bought some new organic everything-free body wash for her. 

And the clock is ticking.  If the pickin' doesn't improve.......we'll start talking gently about the social ramifications of the issue.  (I don't think she's probably even aware that she's doing it!)  But first, I thought we'd give her the benefit of the doubt and assume some honest irritation somewhere. 

Academic skill-building and pickin' remediation.  Those are my summer goals.  Ain't parenthood grand?