Friday, March 27, 2015

Our Special Needs Journey:Part 24 - The Joy in the Ordinary

Again it's been too long.  In our world no news is good news, as a general rule.  Life has been boringly ordinary as of late. And I love it that way. As I think of all that our family has been through an ordinary day like this one is right where I want to be. There is so much joy found in the ordinary, uneventful, everyday life.  Moments like this these:

 (This is the blissful start to my ordinary days.)

(This is how I end each day - with snuggles.)

I've had days, as I'm sure you have as well, that were NOT so ordinary.  In a not so extraordinary way. Days when your whole life changes and time stands still at that moment. And in the grief I wished for nothing more than to go back to one of those ordinary, but oh-so-special days.

To the ordinary day BEFORE there was no heartbeat on the ultrasound and my daughter died. Before I miscarried another child. Before there was abuse or heartache. Before I lost my home (okay, that turned out for the better, but it was still hard). Before my daughter was diagnosed with autism. And then my other daughter. And then my son. To before I found my son was deaf in one ear. Before that first period that lead to years of endometriosis pain. Before Dean had his first seizure.  Before my first binge-purge session due to body-loathing. Before the first time I found myself in such despair I began self harm (of which I am in remission).

It's been a long road but where we are now is where I am so blessed to be.  I find myself in a time of beautiful Derbe Rest (read Acts chapter 16). In each those times of brokenness was an opportunity for God to be glorified, for His light to shine through the jars of clay, for my faith to be tested and strengthened. And while God can be glorified in all things I'm so grateful to be experiencing His undeserved blessings in my extraordinary ordinary life.

Thank you for being on this journey with me and allowing me to share this life with you.


Here's what's been happening in our ordinary life.  We had a fun time at the MN Science Museum - Dean especially enjoyed the bubbles made with dry ice! Bruce liked the phones I guess.

(Of course Dean was all about the rainbows)

My fave photo from the day -- Bruce fell asleep nursing. Dan was holding him and I thought I was snapping a pic of his adorable chubby cheeks. It was only later I noticed the milky drool running down Dan's back!

So we're studying geology in school this semester and I thought these chocolate rocks would be a hit. I was right.

 I added some colored paper to an old cardboard scrapbooking-supply-bin and gave Bruce his bin of vehicle manipulatives and he went right to work sorting them into the colored bins.  It was fun to dump them into the wrong color and have him calmly "fix" it.

Being a PCA is back-breaking work! (I love how oblivious the boys are to the fact that they are sitting ON Elijah!)

It wouldn't be a complete blog post without overwhelming you with photos of some of the sensory bins we had this month -- since our "theme" is Spring and Colors they involved a lot of colored items:

Dyeing popcorn kernels was NOT as easy as anything I've done before! This photo does not include the blue/purple because they took longer to soak in color and dye. 

I found these AWESOME pasta noodles at Aldi for $2 per bag! They came in Farm Animals and Traveling Vehicles.  Although they were fun all on their own I did pull out all the natural ones (some had been dyed with spinach and carrot powder already) to add some color to them.  I couldn't help myself!

So pretty, right?! We pulled out trains of every color and glued them to cardstock after we read Freight Train - a book about trains of each color.

Dollar Store straws cut into pieces - Bruce and Dean enjoyed cutting them up more than playing with them.  We later strung them onto pipe cleaners for a little fine motor skill-building.

Water beads are messy. But they are so fun. So I tried again (I swore I'd never buy them again a year ago). Yeah, it happened again.  Dean chopped them up with spoons and they got stuck in the grooves of the wood floor.  There won't be a next time, but if there is, I'll lay down a sheet first. :)

 Lentils. And no, I haven't colored these. 

 They can't all be a slam dunk.  For me, shaving cream (and cornstarch) was an epic fail.  All my preventative measures did nothing to hinder the mess this made.  I can handle a lot when it comes to sensory play but this required far too much clean up to be worth it.
Bruce enjoys sitting IN the sensory bins.  So I found him a bigger bin.  He's playing with colored rice here. He's allergic to rice only if he eats it or it gets into his system. 

Hayden and Dean use pirate ships in everything.  Dry beans this time. 

Taylor had an endoscopy/colonoscopy/biopsies.  She was a total pro. Unfortunately they were unable to find any concrete answers as to why Taylor has such frequent, painful, tummy troubles.  

Here's Brucie in the waiting room for his OT eval. At his 2 year checkup the Doctor referred him for those long overdue Occupational and Speech evals I never got around to having done.  He also had some testing done with his special ed teacher to update his IFSP.

This kid is quite the problem solver! His teacher taped a paper up high and gave him a crayon.  When he could not reach, first he climbed on his teacher's back. Later he ran off and returned with a stool.

While meeting with the Occupational Therapist we tried to redirect him to a new task, but he really wanted another wet paper towel. So he pulled up a chair. I took it away. He got a new one. This eventually led to one of his epic tantrums. The kid can really throw a fit!

For both speech and OT he qualified for services.  I knew these therapists well, as all my other kiddos have seen them for a long time.  They said I was already doing everything at home that they would do - like sensory bins and an OT room.  We elected to opt out of extra therapies for now.

See what I mean by the joy in the ordinary? My son is, to me, EXTRAordinary of course, but there is something so enjoyable about the every day, uneventful moments that brings such satisfaction and joy.

[Visiting Ikea with the 4 Littles (Thuy's kiddos and my boys), racing Lego creations at The Works Museum, and Dean using colored sand to trace his sight words.  This kid is a whiz at reading!]

Dean has been uncooperative with his hearing tests in the past.  At his 6 year (YES - MY SON IS SIX NOW!!) check up he failed the hearing screening. I wasn't at all concerned but we did have to follow up with an audiologist.  Thanks to Bruce, I was familiar with this process. We left with a stamp of approval - he has normal hearing. Typically I'm not a fan of the word "normal" but at times it's nice to hear!

Weight is still a concern, however.  It has become a greater concern as of late -- he has dropped off the charts (the highest he has ever achieved is 6th percentile). Just like with Julia he was not following his own curve, but plateauing. Worse even, he is LOSING weight.  Since he has dropped below 40 pounds he has to go back to his old car seat even.

We had a visit with a nutritionist but we're already doing all the things they suggest - I feel like a pro after all of the work we've done with Julia. His food allergies make things more challenging too.  I'm not sure what comes next...

Forgetting the stroller turned out to be just fine with Bruce! The boys have often asked for one of those cool strollers they rent at the mall - they fought over it a bit.

Toddler Tuesday at Mall of America has an event and a free movie each week.  We have therapy from 930 am to 530 pm on Tuesdays but I rescheduled the morning appointments in favor of seeing Curious George!! The boys both have birthdays in February and have a mutual fondness for that curious critter!  Afterward we caught the free showing of Kung Fu Panda 2.  Look how adorbs my little guys are!

After waiting in line for a good 90 minutes Dean decided he did NOT want to meet George up close and take a photo with him.  Elijah attempted a selfie-with-George-in-background but Dean kept covering up the camera lens. It was too funny!

 Canada Katie came to visit and we had such fun -- doing nothing exceptional. Simply enjoying all that makes up our ordinary lives!

Girls night - with 2 of my favorite ladies Thuy and Katie!

In the midst of this ordinary life time is passing. We are all getting older. I've noticed it most in Julia this past month.  She got a "real" haircut - a salon, with a blow dry and straight iron and all that. Sure, she looks beautiful, but she always has.  More-so she looks older. She attended her first Karate tournament - and came home with a trophy, medal, and a new belt! She was promoted to green/gold!

We've been meeting with her entire team at Melrose, the eating disorder clinic, weekly.  It's tough to say if it helps at all.  I'm still not convinced there is a mental component to it, since we know she has gastroparesis which is a stomach emptying disorder.  However, even on the meds she is stagnant in her weight gain has stalled 14 pounds from her current goal weight.

We had this awesome St Patrick's Day Treasure Hunt! I downloaded a really creative freebie from the teacherspayteachers site and hung up the clues where they fit. The goodie bags were filled with rainbow candies (Mike & Ike, fruit gummies, part of a Nerds rope, rainbow sour straws, Easter mini erasers, a stretchy bunny fidget, a love note, and some stickers.  Then I added some curling ribbon for flair. Okay, I spent longer prepping for this than it took the kids to find the treasure, but they really enjoyed it. Worth it. 

The last thing I want to share about my ordinary life is about this conference I attended at the Pacer Center (a special needs advocacy group).  It was a 3 day Parent Leader Training for parents of special needs children.  A very in-depth look at the IEP (individualized education plan) and evaluating areas of need with services provided that are targeting that area.

This is helpful in the services we receive in our private therapies - OT, ST, PT, social skills, etc. Because I homeschool, the kids do not have active IEPs at this point.  Dean had one that followed him from 20 months through the end of Preschool.  Bruce currently has an IFSP (Indv. Family Service Plan) for under 3 years old.  Dean had transitioned from this to an IEP.  The girls had ones in place in elementary school.

The instructor was assisting me in this Parent Homework Sheet activity and noticed a part about Bruce's progress updates with his expressive language.  "17 years and I've never seen an IEP that included the word 'boob.'" Glad I could be the first? (The statement was that Bruce had been using signs and words for several things, such as 'boob' for nursing.)

On the 3rd day Pacer held a training for the public on the ABCs of IEPs and the Parent Leaders were to assist those attending.  I was the only one who had experience with an IFSP in early childhood and connected with this family whose children were - get this coincidence - deaf (her husband and father in law are deaf as well).  Much more than Bruce, but I still felt so bonded to this mom.

It was exceptionally rewarding to speak with a parent on the front end of her special needs journey. I didn't realize how far we had come until reflecting with her what it is like to be just beginning. I told her about TEFRA MA and the exact process I went through to get approval. It was life changing for us and she lit up like a streetlight upon hearing about it.

And although the group of moms attending this workshop with me were, most of them, far more liberal than I, it was a comforting crowd. There is an instant and unspoken bond when in a room full of others parenting special needs children. What a comfort to be surrounded by others who just "get it."

To know that there are not any other options: you be the best parent for that child that you can be. More than that. The parent they deserve.  It's not a choice, it's a given.  I am NOT always successful but that is where that whole "God's light shining through the cracks in my clay jar" comes in. He gives me the strength to live my ordinary life.

Ended our ordinary day today with a round of Doodle Dice and a homemade Contraction Concentration game.